A Likely Story

Last night at my Grandparents’ Thanksgiving dinner, I was hidden in the side room as the guests arrived. The friends of my Grandparents - we’ll call them Bobby and Barbie and Sam and Sammy (who contribute to my theory that when people are older, they names will magically match in some manner) - had come over and were fretting over the 7th spot set at the table, asking my Grandmom who else was coming. And she smiled and opened the door, revealing me.

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.

Jennie

Crohns DVD Launch: Ashley's Talk on Crohn's Disease

Hi Guys,

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.

My Speech:
Hi Everyone,
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.

Abbott Laboratories Releases New Crohns Educational DVD!

Hi Everyone!

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 :)

Hugs,
Ash

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 :)

The hardest thing to say...

If you think back in time you will find that one person that was always there for you. That one person that comes to mind more then others because of the things they did for you. Sometimes it can be a friend, it can be a family member, or it could be someone who started off as a complete stranger. When I think back to when I was really sick, a few people pop into my head. My sisters, my parents, my nurses, my counselor, my friends, my doctors, I think I could go on and on. However one person always stands out even more, one person that I feel deserves a lot more from me then I can give her. If she doesn’t already know that I’m talking about her, it’s my Mom!
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!
Mom;
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…

THANK YOU!

Colleen Lynn

“I have Crohn’s Disease, Crohn’s Disease does not have me!"

Thanks

What are you thankful for? In a little under a week, I will be sitting at my grandparents’ table being asked that question. So in preparation, here are my answers:

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.

Jennie

Mississauga's JGS Went Great!

Hi everyone,
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

The Specific Carbohydrate Diet...

So I’ve been wondering – has anyone heard of the Elaine Gottschall Breaking the Vicious Cycle Diet? Has anyone tried it? The Crohns and Colitis Foundation of America is looking into this diet known as the Specific Carbohydrate Diet, and there are loads of blogs and youtubes going up consistently about it and how people have claimed to have found a cure in it. I’ve tried it. I’ve met Dr. Ron Hoffman at a medical conference in California last year (He wrote the forward, and he told me to my face that it works). I’ve spoken to Lucy Rossett (she owns Lucys Kitchen Shop, where you can buy a lot of the things to help make some of the food prep easier, like a yogurt maker, etc) and she says the diet cured her colitis... Now, I know there are loads of false claims and Im not saying this is one of them, but I wonder who else has tried this diet? And have you had success? I wonder what research will show when it comes out…

Hugs,
Ash

The Underwear Dilemma

A comedian with Crohn’s once said that it was frivolous to invest in any underwear besides black and brown, for camouflage sake. But if you ask me, once your underwear (regardless of color) have been made black or brown from an accident, they belong in the garbage.

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!!

Jennie

Lest We Forget!

As Remembrance Day approaches, one man comes to mind more then others. Three years ago, on October 4th, we lost a family member, a man who brought smiles to our faces as long as I can remember.
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”
~Colleen

Tummy Cramps, Dizziness and Headaches, oh my!

This past weekend started off wonderfully - incredible tummy cramping began yesterday :(. Today when I tried to make it to work, I lasted an hour, and had to call my dad (at age 24) to come pick me up. I guess you can never be too old to call on your parents. How great they are though... at the drop of a hat, dad picked me up and I was at home in bed; mom frequently checking on me to make sure I was ok. I fell asleep waiting for the Tylenol to kick in. What amazes me the most is how FAST things can change. How fast our health can change in the blink of a second. I think the biggest thing that gets me down is not having control over my body, but I guess thats something I need to learn to accept with Crohn's. And I hate having to call in to work to cancel, but I guess thats something else I need to learn to cope with - its gunna happen. Sometime's learning to love the skin your in can be the toughest thing - its easy to love yourself when things are going great, but when things aren't... how do you manage to not beat yourself up for the way you feel? Maybe its the scientist and perfectionist in me: thinking I can fix everything myself.

Cheers to better health,
Ash

The Downside to Crohnies

Even those of us who suffer from IBD can fall victim to its elusive external attributes - we can look at our fellow Crohnies and not realize how sick their insides might be. We can form such close bonds with those who understand our most personal struggles, and I’ve found that seeing them sick can be the worst part of having IBD.

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?

Jennie

Oh the changes!

I still vaguely remember a time in my life when Ulcerative Colitis wasn’t a disease that made my head turn, when Crohn’s Disease wasn’t a topic I could tell you almost everything about, and when IBD wasn’t a common topic in my house. It wasn’t yesterday, and it wasn’t last year. Actually, some days, it feels like there was never such a time in my life. Some days it feels like I’ve had Crohn’s Disease since the day I was born. I don’t really remember living without an ostomy either. They’ve both just become…me!

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!”
-Colleen Lynn

Exciting News for Crohn’s Patients!

Hi everybody – its Ash here! I have very very exciting news for individuals with Crohns Disease. An educational DVD (Free!) is going to be released soon in Canada addressing topics specifically for individuals with Crohns. Topics include: nutrition, exercise, family, relationships/bfs/gfs, medications, inspirational story…. Just to name a few J . Abbott Laboratories (the guys that make Humira), one of the Crohn’s and Colitis Foundation of Canada’s (CCFC) big sponsors has partnered with CCFC to release this DVD... Super exciting stuff! There is also a gastroenterologist (my GI, to be exact ;) ) that gives an introduction to each topic, and explains in detail, using pictures and cool animations, what happens physically with Crohns.

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!

Hugs,
Ash