Guest Post: Paul's Story

I was 59 years old.  I was married for 37 years.  We were very proud of our 2 adult children, both of whom were professionals and solid people.  We had 1 grandchild.  We had no financial worries.  I had an active business that I enjoyed.  I was healthy and fit and physically active.  Life was good. 

I had rectal bleeding for over 2 years, but with a stereotypical aging male attitude, I declined all tests and examinations.  Eventually I did succumb to a minor procedure to snag and remove hemorrhoids.  But there were no hemorrhoids, just one polyp.  The biopsy resulted in a diagnosis of Invasive Adenocarcinoma (Rectal Cancer) and the prescribed treatment was Abdomino-Perineal Resection (surgery with a resulting permanent colostomy).  I had cancer.  Life-expectancy was uncertain.

In August 2009 I traded Rectal Cancer for Resection and a Permanent Colostomy.

It was a good trade. 

Very early in my Cancer&Colostomy adventure, I resolved that I will live.  Any pain and body-damage will be just a minor side effect. After surgery, I will do everything that I could do before surgery. Nothing hurts.  Never quit. This was all true then. It is still true now.

Four months after surgery, I was back playing hockey.  That caught the attention of the Phoenix Magazine, and they published a 5-page coverstory of my experiences, attitude adjustments, and comeback to hockey – and showing other hockey “tough-guys” the importance of prevention.

For my first coloversary, I hiked the West Coast Trail – one of the Top-10 Treks in the World, traveling through pristine Canadian wilderness. Look for this story in the October 2012 Ostomy Canada magazine.

Two years after surgery I trekked to Everest BaseCamp.  EBC is a very special place. For some, it is a lifetime bucket-list highlight. For others it is the destination at the end of a long trek. But for the 5 cancer survivors there was a special connecting bond.

We spontaneously joined in a circular huddle with eyes closed and heads bowed. To us, it seemed the wind and snow stopped, and the 5 of us were alone. We each experienced our personal flashback - from the cancer, through treatment, through recovery, to standing together at Everest BaseCamp. As if controlled by a single mind, we simultaneously raised our heads and met the eyes of our fellow survivors. One survivor said 'We are alive, and We are here on Everest’. Emotions were shown by some, felt by all. Thankful – Joyful – Peaceful – Proud - Hopeful

A Colonoscopy is a simple and effective lifesaving procedure, yet many people still refuse or avoid. Even with daily rectal bleeding for over 2 years, I had declined all tests and examinations. With earlier detection, I would probably have avoided the surgery and permanent colostomy. We, the fortunate warriors and survivors, can save lives by educating others … one person at a time.

I share my experience in person, and through social media.  And it hits hard, particularly on hockey players.  Over the past three years, I have had dozens of hockey players discretely tell me they recently had a Colonoscopy.  Several wives (mostly with tears) told me they had been unsuccessfully ‘encouraging’ their husbands for years, but it was my experience that had convinced their husband to have the colonoscopy done.  Hockey Associations across North America have pushed this message to over a 100,000 hockey players. I am humbly pleased that others have benefitted from my experience. 

The Cancer&Colostomy was certainly life-changing.  And in a good way.

I appreciate life more than before.  I have simplified life to do more of what I want to do, and less of what others think I am obligated to do.  Dormant bucket-list adventures are now realities.  When embarking on new life-experiences, or again experiencing treasured places or activities, I am humbled and thankful for the opportunity given to me.  A colostomy is not as good as the original equipment, but I get to live.  Living is everything.

Three years ago my doctor told me I could have a perfectly normal life with an ostomy. 

I didn’t believe him then.  I do believe him now.

 

Paul  

http://www.livingbiggerwithcolostomy.com 

http://www.facebook.com/LivingBiggerWithColostomy

Gutsy Goes Vlogging

Brace yourselves...

We've decided to join the 21st century. 

Our generation is often criticized that we're too attached to electronics and the internet. And while we're all for real human contact and enjoying the outdoors, we think that the internet is great for connecting and building communities with other IBDers. 

That said, all you've got to see (or rather read) of us are words we write and the occasional picture we post. But you don't know what we really look like or talk (sound like?) like and we think that's important too!


And so - deep breath - we have ventured into the world of vlogging and YouTube. Here are our two first videos with some introductions (we're so progressive, we even have a channel!). We can't wait to hear what you think about our new adventure into the world of technology, and we'd love to know about topics you want to hear about!


With love and (minimal) guts,
Jennie + Taylor


PS Don't judge the thumbnails... we're not tech-savvy enough to change them!

Guest Post: Sara's "Letter to Me", Part Two

So this is what you need to know to navigate your teenage years with a disease. Don't listen to the doctor when they tell you that you can only eat white rice. You try that for months to get better and it doesn't work and you end up getting the nickname "rice girl" from your uncle because that was all they could feed you when you stayed with them for a week. Learn as much as you can about your disease because you really don't know enough until you hit your twenties and that knowledge would have came in handy. In fact, no one in your family takes your disease seriously because you don't talk about your health and mom thinks it's just like her IBS and that if you eat something different you'll be fine. She doesn't quit thinking this way until a few days before you have surgery...sorry honey, I should have broken that one to you gently. I'll get to that in a second. The summer before high school you get an opportunity to fly to California with your cousins to visit the Red Wood Forest but you wind up having a bad flare-up a few days before you leave with awful diarrhea and terrible pain and they think you are lying to get out of the trip. This is your first taste of something you're going to deal with for the rest of your life. Some people are just never going to understand what you go through so get used to that. There will be times that pain will stop you in your tracks and knock you to the floor but you don't know that it's a part of your disease. There will be times of diarrhea and pain and blood but you quickly brush it off as nothing because your flare-ups tend to last a week or two or at worst a month or two, but they are not as bad as what you will experience later. When you go out to eat you usually get terrible tummy aches and have to rush to the bathroom, that is also your disease. If you take any of my advice just please get as much knowledge as you can about your disease and stop ignoring it because you really need to manage this better. You hardly ever take your medicine and when you do it doesn't do anything for you. This is because you're not on the right meds for you and you should really work that out. Your teen years are not all that bad though! You start dating a guy in 11th grade that you stay with for 7 years and you are really happy with him. You are a competitive dancer who ends up assistant teaching by the age of 14 and then teaching your own classes by the time you are 17 which as you know is your dream come true. You work 2 jobs, you excel in school, you have great friends, and you are in wonderful shape. In fact, you pretty much ignore that you have a disease the entire time. Cherish this time! You have energy, you can do things, you have it all and soon this will go away so please please take advantage of it.

Okay kiddo brace yourself. When you get into your twenties you finally know all about your disease and what can potentially happen but you always think "that won't happen to me, mine isn't that bad." Well, it's not that bad yet! Your last semester of college you start to get the symptoms you've become familiar with. Bloating, pain, and diarrhea return but you are positive that it wont last long because that is how it's always been. So every night you go to bed you tell yourself that you're sure it will be gone in the morning. Sadly babycakes this does not happen. Instead of it being better the next day it gets worse, and it gets worse and worse until you're sure you're going to die. You're going to start going to the bathroom up to 30 times a day and at one point you count going to the bathroom 52 times in a day. You will experience the worst pain you've ever felt, lots of blood loss, high fevers, immobilizing arthritis, weight loss, and so much more and no medication that you take will stop this. If you're not near a bathroom you could have accidents, and sometimes you do. They really embarrass you and so you start to isolate yourself. You skip classes and end up failing the semester, you stop hanging out with your friends, and eventually you're so sick that you have to move back home with mom and dad. Life is bad and you're all alone in this and everyone is scared for you.

I know this all sounds bad but it gets worse I'm afraid. You go into the hospital and you're there for six months! During that time you have two surgeries. Little girl, I'm not going to tell you anymore about this time because I am certain it will scare you but I also want you to experience it without knowing what happens. I will tell you that it will be the most difficult thing you're ever going to go through in your entire life. I also want you to know that after this it doesn't get better, you keep having complications for years after your surgeries and more hospitalizations and you end up finding out that you don't have ulcerative colitis after all but you have Crohn's disease. I could tell you a lot of things that could potentially help you get through this a lot more easily but I don't want to. Not because I don't love you, but because I do. All of these struggles are going to turn out to be a huge blessing for you and if you don't go through them you won't become the person that you are meant to be.

Now here is where I get to tell you the good news. You matter! You end up making a difference in peoples lives because of all that you've gone through. You have to go through these things to turn into the person you become, the person who is writing you this letter. You will share your story with thousands of people and become somewhat of a role model to other people living with your disease. You do this not because you want to be a role model or well known, but because you truly care about those people and want to make a difference in their lives. This is what makes you feel like everything was all worth it in the end. It turns out that you end up being a huge advocate for your disease and you have no problem talking all about it to anyone and everyone. Crazy right? Sara, you are going to have this disease the rest of your life. You will take medications, you will have more hospitalizations, and you will go through so many things for the rest of time. It's not always going to be easy but I can tell you that you are strong enough to get through all of this. Just as you are a little girl right now being strong in the hospital and being brave while you get your shots and IV's you will be strong and brave the rest of your life. There will be times where you will think that you can't make it, that you don't even want to make it, but do not give up. I am writing you this right now to tell you that you are okay. In fact, you're better than okay. So tiny dancer, chin up! I assure you that you are happy and proud to be who you are. This disease is going to knock you down over and over again but what you can't see is that it's also going to turn out to be one of the biggest blessings in your life.

Love,

Yourself.

P.S. Not all doctors know what they are talking about.

P.S.S. Dark colored underwear and clothes are your best friends.

P.S.S.S. You look better with age. ;)

Guest Post: Sara's "Letter to Me", Part One

Hey Squirt!

I know you hate that nickname right now but when you get older you're going to appreciate your parents little names for you. You know how mom always calls you Squirt or Sarie and dad calls you Saro? Let them, they are just loving you and you're going to need their love a lot to get through this. Anyway Sara, I'm writing to you from the year 2012 to give you some advice about how you are going to get through all of this.

Right now as you sit in your hospital bed reading this you're scared. I know you are because I was you, well I am you. I am the you that exists in the future and I want to tell you about how great you become and how being sick completely changes your life. You know how you've been staying in the hospital every year since you were a baby because of dehydration, severe diarrhea and constant vomiting? Well you have a disease but you're not going to find out what it is until years later when you're a teenager. For now they are going to tell you it's a bunch of other things causing it like what you eat or "nervous stomach". I'm sorry babygirl, that probably just scared you. The word disease is a scary word, but don't be scared, just listen to your story...

Right now I know you hate the hospital because it's scary and lonely and you don't like when mom has to leave you to go home to be with dad and Matt. Do me a favor and make friends with the other kids there. They will play with you and their moms will take care of you when your mom can't be there. You are forever going to remember one mom in particular who is the mother of the little boy in the room next door. She is going to make sure you feel comfortable and loved and keep you from feeling scared when mommy has to leave. I know you hate those hospital beds because they always give you a bed with bars on it like some over-sized crib and you're not a baby! Sorry girl but this isn't going to stop until you're 8 years old so you may as well get used to it. Also, you're going to spend Easter there but don't worry because the Easter bunny still finds you and manages to bring you an Easter basket full of all sorts of candy. You can't eat it now because you're sick but you can when you get home. I'm really proud of you for how brave you are. You don't even think getting an IV is a big deal and it doesn't even hurt! You're not even afraid to watch when they put them in. All this will come in handy later on in life because you're going to spend other holidays in the hospital, not be able to eat, and will have plenty more IV's and it wont be as easy to get them in as it is right now. You hear other kids cry when they get shots or IV's and you wonder why they are being such babies about it. Cut that out and be nice, they're just scared!

Wanna know something great? You're going to get a break soon and from the time you are 9 years old up until the age of 14 you will forget all about being sick! In fact, you'll hardly remember much about the times you were sick as a kid because it all fades into patchy memories. I would like to give you a lot of advice about your teenage years because frankly Sara they are a mess. What the heck are you thinking then I don't know, but in the end you turn out to be alright so I'm just going to let you go through all of it because I think it really helps you become who you are. I don't want to scare you because you're young but I think you can handle what I am about to tell you. Most kids who are sick have to grow up a lot faster than other kids anyway so I know you are already strong. When you become a teenager you're going to start seeing blood in your poop. Yeah, I know that sounds awful and so gross! But listen carefully, tell mom! You're going to start seeing blood and do things like wish it away, pretend you're seeing things, and then when you really know that it is indeed blood you're seeing you never say anything about it at first. Don't do that! This is the first sign that something is going wrong and this is the biggest window into your future health issues. Eventually you do tell mom and you go to the doctor and they make you do a test where you have to collect your poop into some jars and bring it back to the doctor so they can test it. You will find this to be the worst and most embarrassing thing to ever happen to you and you throw a teenage tantrum and cry and scream at your mom that you're simply not going to do it. In the end mom wins and not long after, and a few tests later, you get diagnosed with ulcerative colitis. You are scared to death because having a disease is a big deal. You wonder what it all means, you wonder if you're going to die, you cry, and then you ignore it.

Love: Yourself

Check out this gutsy gal at:

 

Blog: http://agirlwithguts.tumblr.com/

Facebook fan page: https://www.facebook.com/Inflammed.Untamed

Girls With Guts: http://www.girls-with-guts.com/

Bug

Your mission – if you choose to accept it: become a bug.

No, I’m not asking you to grow six legs and live in an anthill in your front yard. As I was thinking about Gut Inspired’s topic of the month of medical choices, a million things came to mind but I finally distilled my thoughts into a word: ‘bug’.

The best patients are bugs – we bug doctors, we bug nurses, we bug pharmacists. I know what IBD really stands for, but I think it should also stand for ‘I Bug Doctors’. Bugging someone has such a negative connotation, but we have to remember that the regular social laws of conversation and friendship don’t – and shouldn’t – apply to our doctors. We don’t have to agree with them all the time, we can say no, we can ask for a second opinion, we can even get up and walk out. I’m in no way saying to be mean or rude or disrespectful to your doctor, but at the end of the day, he/she is YOUR doctor and is accountable for your body and your future.

Example #1) The summer that I got really sick before my surgery, something just felt wrong and different and broken. I bugged my GI for a scope and managed to get in on a cancellation list. Lo and behold the colon was dying. I was a bug and it worked.

Example #2) The surgeon wanted to do a J-Pouch because he thought it might be colitis and that as a young girl with IBD, I would never want an ostomy. Wrong, I didn’t care about an ostomy – I wanted one. I just wanted to feel better and never go to the bathroom again. I bugged for a permanent ileostomy, he agreed. I was a bug and it worked.

Think of it this way: if you were buying a house, you’d do a lot of research first. You’d look at different houses, talk with different realtors, ask your family’s opinions, check out the neighborhoods, and get someone to inspect the house. You’d take time to think about it in relation to your life and if it were near school or the hospital or your friends. So why then do we not apply the same scrutiny and effort to making medical decisions? All too often we get a precious few minutes with our GI and we are expected to decide on medications right there on the spot.

In my own experience, I’ve found that doctors try to make the right decision for you without knowing you. They mean well, and they certainly want to see you get better, but they have no way of understanding you as an individual if you don’t speak up. Doctors and nurses are usually surprised when I tell them I have a permanent ostomy, they ask why I don’t have the J-Pouch and I tell them it wasn’t right for me. They make assumptions and judge the values they think I have based on my age and gender – but they don’t know me and only I can make the best medical choice for myself.

Here is my final metaphor for this post – choosing treatments is like choosing to wear skinny jeans (I promise I’m going somewhere with this). Skinny jeans may be the most fashionable thing to do, it may be the most popular thing to do, everyone and their dog may be wearing skinny jeans and look great in them. But maybe you don’t want skinny jeans, maybe you want to shop around for sweatpants or cargo pants or heck, maybe even army pants. The point is everyone is different and different things will work for them. My pediatric GI once told me, “You’re not responsible for having IBD, but you are responsible for helping yourself get healthy”.

So be a bug, be the very best bug you can be, your bowels will thank you for it.

Jennie  

"There was a toilet seat and everything!"

As my mom and I exited Pearson Airport last night after arriving back late from Italy, I ran to make a bathroom stop before the drive home. As I exited the washroom, I found my mom waiting with our luggage walked up, smiled big and said, “That was so great! There was a toilet seat and everything!”

While in the car home, overtired and giggly my mom and I laughed about our ridiculously long and eventful travel day, our favorite parts of the trip, and then proceeded to list all of the things we were thankful to have back in Canadian bathrooms as well as some things we were confused about (I believe that this is a list that would only be compiled by two IBD-ers).

So here is our list:

1.     Toilet seats - do they think people are going to steal them, or have people stolen them in the past?

2.     Toilet paper – doesn’t everybody use/need that?

3.     Toilets – squatting into a hole is way too much of a lengthy leg work out and a skill we both have not perfected, thank you very much!

4.     Free washrooms – if there are no toilet seats, no toilet paper and no toilets then what are you paying for anyways?!

5.     Single Sex washrooms – because it is always a confusing moment when you run into a big burly dude coming out of the stall.

6.     Lights – isn’t this also needed or at least preferred by everybody?

7.     Paper towels and/or hand dryers – because although it’s fun to come out of the stall and say, “Ewww I peed on my hands!” and watch the fear strike over somebody while you chase them around, we believe we are both a touch too old to get away with that anymore.

8.     Access to public washrooms – a lady at a café legitimately gave me these directions to get to their washroom, “Turn right, walk down the street, there will be a green door, find apartment number 8, ring up and tell them you are coming from here, once they ring you in, it is the third floor, second door on your right, don’t worry it’s not that far!”. Yeah, needless to say I didn’t use what appeared to be some random Italian lady’s bathroom.

Don’t get us wrong, we both LOVED Italy! It is a breathtaking country and would return in a heartbeat, but we give major props to European IBD-ers, you are all champs!

Sincerely,

Two spoiled Canadian IBD-ers

Taylor and Kim

Case in point: a squat toilet

"Tri"-ed and True

To S - this one’s for you.

Anyone who was successful was once thought to be crazy. Someone thought they were too small, too slow, too inexperienced, too naive, or too sick. 

This morning when I woke up at 5 AM to my packed backpack ready for the ‘super sprint’ triathlon I was attempting, both my parents carefully warned me, “Now don’t be stupid, if you need to stop, you need to”. When S picked me up to take me to the location, I recounted this story to him, to which I said, “Clearly stupid is my middle name”. This is extremely reminiscent of Simba in the Lion King (click to see what I’m talking about!).

I was recently watching a video about Rob Hill (after all, like any sane person, if something has the slightest bit to do with Rob, I’m interested) and he said that he didn’t climb mountains because he was crazy or because he had some deep, burning desire to do so - but more to show everyone that it was possible. And by no means and I even attempting to compare myself to Rob, but I understand the sentiment: doing this mini triathlon wasn’t because I’m a super swimmer/biker/runner and it’s not even necessarily that I enjoy any one of those things. Moreover it’s because the feeling of movement and freedom and health and strength from doing those activities is addicting and electrifying. 

And so I suited up and had a theme for the day: consistency. If you go out too hard, you get tired, so as smooth and equal as you can make things the better for your body. I literally found out about the race about 3 weeks ago from S, and so my training schedule had been compressed to put it lightly. But as I told my parents,  it was never about placing or getting a medal, it was about finishing. And finish I did.

One of my favorite memories from Peru was on the 3rd day when everyone walked alone as we trenched through the Cloud Forest. I decided not to play my iPod and instead just listened to my body and the silence of my surroundings. Today iPods were not allowed and I was again put in the position - or rather given the opportunity - to listen to my breathing and water sloshing over my back as I swam or the wheels spinning on the bike or my sneakers against the trail and my heart vibrating in my chest. 

I don’t like being told what I can’t do. In fact I hate being told what I can’t do. Because truthfully (if not naively), I don’t know if there’s anything I can’t do. What I mean is not that I’m going to become an Olympic triathlete by tomorrow or raise global awareness about IBD, but that when I set my mind to something, I’m going to work as hard as I possibly can. 

Like most everything, the race was over before I wanted it to be - I ran across the finish line, had a little medallion placed over me (ahh, my very own Olympics minus the podium!), hugged S, and downed my water bottle. And then I watched S do the triathlon and cheered. 

Sometimes in life you’re the athlete. Sometimes you’re the spectator. It’s the push and pull, the give and take, the adding and subtracting that keep everything interesting and constantly evolving. Take a moment every now and then to listen to your body - tune out everything and everybody else - and take inventory of things for you since they’re happening to you and decide where you want to go, what you want to do. And then go do it.

It’s simple advice to give, harder to take and live. But, my friends, it’s tried and true.

Jennie

Bike helmet, electrolyte tablets, Crohn's & Me waterbottle, sneakers, race number, race medal, banana, IDEAS bracelet, Cliff bar, Triathlon NS blue bracelet