Saturday, December 24, 2016

'Twas The Night Before a Crohnie Christmas

Every year for the past 11 years, I read Twas the night before Christmas to my kids on Christmas eve before they go to bed....here's the Crohn's Disease version that I don't read to my kids...


‘Twas the night before a Crohnie Christmas, quiet as a mouse
Trying to get to the bathroom without disturbing the spouse.
The TP was hung by the toilet with care,
In hopes that I don’t run out whilst I sat there.

The children were nestled all snug in their beds,
I hope I’m not too loud lest I wake their sleepy heads.
And mamma in her ‘kerchief, and I in my cap,
But I had to get up, I needed to crap.

When out on the lawn there arose such a clatter,
I sprang from my throne to see what was the matter.
Away to the window I flew like a flash,
Still pulling up my underwear to cover my ass.

I live on the coast so there wasn’t any snow
Just dreary wet grass that I can see below.
When, what to my very tired eyes should appear,
But a miniature sleigh, and eight tiny reindeer.

A decrepit old driver, not lively or quick,
I knew in a moment it must be St Nick.
He didn’t look well, he must be inflamed,
But he whistled, and shouted, and called his reindeer by name!

"Now Crohns! Now, Colitis! Now, Pain and Grouch!
On, Abscess! On, Fistula! On, Ostomy and J-Pouch!
To the top of the porch! To the top of the wall!
Now dash away! Dash away! Dash away all!"


And then, in an instant, I heard on the roof,
The scratching and farting of that big, silly goof.

As I drew in my head, and was turning around,
Down the chimney St Nicholas came with a bound.

He was dressed all in fur, from his head to his toe,
He looked very fatigued, he moved really slow.

A bundle of toys he had flung on my chair,
He looked in pain, it must be a flare.

His eyes, how they squinted! His face quite scary!
He let out a fart, not pleasant or airey!
His droll little mouth was drawn up like a bow,
I was getting prepared, he was gonna let another one go.

The bags under his eyes, I saw his fatigue
That comes from living with this dam Crohn's Disease.

He had a broad face, (must be the Prednisone),
If he didn’t hurry, he would soon need the throne.


He was chubby and plump, a right smelly old elf,
And I laughed when I saw him, in spite of myself!
The moon face, mood swings and twitch of the head,
Soon gave me to know it was for sure the Pred.
He spoke not a word, but went straight to the bathroom,
And filled my toilet with a splat! and a KABOOM!

And laying his fingers, covering his nose,
Giving a nod, up the chimney he rose!

He sprang to his sleigh, he now weighed so much less,
He thanked me and apologized for the big mess.
But when I heard him exclaim, I realized he knew my plight,
“I have Crohn’s Disease too, it’s going to be one HELL of a night!!”
 
Merry Christmas everyone!!

Crohn's Advent Calendar - Day 24

Opening the final toilet seat door this morning to find...


it empty....because one day this door will be filled with a cure


Merry Christmas !!

Friday, December 23, 2016

Thursday, December 22, 2016

Wednesday, December 21, 2016

You Might Be A Crohnie

If you lose count how many times you sit on the toilet in the night...


you might be a Crohnie

Crohn's Advent Calendar - Day 21

Opening the toilet seat door this morning to find...


a magnifying glass !! (to find my veins)

Tuesday, December 20, 2016

Monday, December 19, 2016

12 Days A Crohnie Christmas

I'm reposting my 12 Days....make sure you sing it !!


On the twelfth day of Christmas my Crohn's Disease gave to me...

12 rolls of super luxuriously soft toilet paper
11 pairs of underwear,
10 Remicade infusions,
9 colonoscopies,
8 attentive and caring nurses,
7 types of medications,
6 different doctors and surgeons,
5 kidneyyyyyyy stonnnnnnnnes,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopyyyyyyyyyyyyyy !! 


Merry Christmas everyone!

Crohn's Advent Calendar - Day 19

Opening the toilet seat door this morning to find...


a Get Out Of Jail free card !! (to be used at the hospital)

Sunday, December 18, 2016

Crohn's Advent Calendar - Day 18

Opening the toilet seat door this morning to find...

jeans !!!  (but in every size possible for the weight gain and loss and gain and loss..)

Saturday, December 17, 2016

Crohn's Advent Calendar - Day 17

Opening the toilet seat door this morning to find....


the "10,001 excuses to tell people why you can't participate in things", book !!!

Friday, December 16, 2016

Crohn's Advent Calendar - Day 16

Opening the toilet seat door this morning to find...


Iron supplements !!!!!



Thursday, December 15, 2016

Wednesday, December 14, 2016

Tuesday, December 13, 2016

You Should Have Your Head Examined.....

I had my dermatologist appointment today to look at some weird stuff going on with the top of my head.  I guess I can add another doctor to my list, dermatologist, family dr, gastro, surgeon (x2), urologist and dietician.
So, I have a form of plaque psoriasis on top of my head that has formed a hard shell.  It started out a few months ago as just red and itchy, but has now turned into a dark, crusty shell about 4-5 cm circle.  The Dr was concerned about being cancerous so took a biopsy right in the office.  It was kinda humorous because the dr gave me a piece of paper and told me to go back to the reception desk. I gave it to the lady and she turned and called out to another lady "we've got a procedure" and told me to take a seat while they prepped the room.  I went to sit and was wondering what prep the room meant.  What the hell are they going to do to me?!  It's just a biopsy, are they removing my head or something?!!  LOL
She called me in to a rather large room that had a chair in the center with a big light above lighting up the chair like a spotlight.  I realize it's so the dr can see what he's doing but it looked like something out of a sci-fi movie reminiscent of alien abductions and some weird experiments going to be performed. It was rather uncomfortable as far as big chairs go, but I just wanted to get this over and done with. He injected some local freezing and waited....thank god...then started to cut a piece of my scalp. I'm always amused by doctors when they start a procedure and say "ooooh" or "ummmm" or "hmmmm". He then asked me if I'm on blood thinners...maybe should have asked BEFORE cutting into me, but....I'm not. Apparently there was quite a bit of blood for such a small cut. He had a lot of cleaning up before sewing me back up.  Now I have to wait until February for results....not happy about that.....hoping it's not cancerous and its something that can be fixed.  I've been wearing more hats lately.  Now the freezing is wearing off....ouch. I need to go to my regular dr to have the stiches removed in a couple of weeks, yay.


Well, my mum always said I needed my head examined, so I'm sure she was looking down on me having a good chuckle.

Crohn's Advent Calendar - Day 13

Opening the toilet seat door this morning to find.....


vitamin D !!!!!!!!

Monday, December 12, 2016

Crohn's Advent Calendar - Day 12

Opening the toilet seat door this morning to find...


keys to the executive washroom !!!

Sunday, December 11, 2016

Crohn's Advent Calendar - Day 11

Opening the toilet seat door this morning to find...


cranberry tea !!!  (to help combat kidney stones)

Saturday, December 10, 2016

Crohn's and Your Teeth

Anyone else noticed problems with your teeth?  More and more lately I've been having problems with mine.  I've had two pulled because they broke, one root canal (so far), one completely broke in half but is still in because its not causing any problems and now just a few days ago, part of another tooth literally "fell away".  I wasn't even eating!! Now I need a crown or root canal.
After this last one got me thinking if its just me or if it's a Crohnie problem?
Almost 30 years of different meds, lack of nutrition, dehydration and overall lack of the proper vitamins and minerals obviously take their toll of the body (and soul). It's frustrating at all the things that can go wrong based on one disease.  Yes it's a bowel disease, but affects the body as a whole from the top of your head to the tip of your toes.  It's never just one....

Crohn's Advent Calendar - Day 10

Opening the toilet seat door this morning to find....


world map of every possible public washroom !!!

Friday, December 9, 2016

Thursday, December 8, 2016

Wednesday, December 7, 2016

Tuesday, December 6, 2016

Monday, December 5, 2016

Crohn's Advent Calendar - Day 5

Lifting the toilet seat door to find....


baby wipes !!  (cuz you just never know)

Sunday, December 4, 2016

Crohn's Advent Calendar - Day 4

Lifting the toilet seat door to find...

shampoo samples !!! (for when you have to go in to hospital)

Saturday, December 3, 2016

Friday, December 2, 2016

Thursday, December 1, 2016

Crohn's Advent Calendar - Day 1

Morning all!  It's that time of year again, the month of opening my Crohn's advent calendar.
Hope everyone has a healthy month!


Opening the first door, which looks like a toilet seat, to find.....


toilet paper !!!!




Come back each day to see what's next....

Monday, November 28, 2016

Remicade : Day 1583

Nothing too exciting about this dose of juice.  Although, I'm finding more and more that I'm "needing" the infusion as it gets closer simply because I get run down and tired, not to mention the abscesses and fissures appearing more now. I'm starting to have problems with my scalp now, but need to go to dermatologist in a few weeks to find out whats going on there.  Is it the Remicade?  Is it my age? Is it "just because"?  Who knows anymore.  After 28 years with Crohns, I can never tell and just deal with whatever comes my way with a smile on my face.....sometimes.
I keep trying to tell myself that it could be worse and there are millions of people in the world who are having a way tougher time than me.

Monday, November 14, 2016

You Know You're Flaring When...

You know you're having a flare when....

...you break down and actually USE the public washroom !!

Wednesday, November 9, 2016

Remembrance Day

At the 11th hour, on the 11th day of the 11th month we all (or should) pause and remember and give thanks to the men and women that have served our countries and have not returned to their families.  In the 28 years of living with the pain, surgeries, discomfort, odd looks, emergency room visits, worked missed because of Crohn's, I haven't forgotten what those before me sacrificed.
And to say that, what I go through is nothing compared to what they did.



I have nothing to complain about.







Wednesday, November 2, 2016

You Might Be A Crohnie

If you find yourself hoarding the mini shampoo bottles from hotels to replenish your stock for when you go in to hospital
...you might be a Crohnie

Friday, October 21, 2016

Crohnie Quote Of The Day

"My life is a constant battle for my love of food and not wanting to be in pain"

Sunday, October 16, 2016

Remicade : Day 1546

This month was really non eventful as far as my infusion goes.  It was the lead up that had all the "excitement".  To start, my infusion was changed from my usual "home base" to one further away, which is fine I guess, but it screws with my routine the day of.  I forgot to pre order my meds so I was freaking out the pharmacy wouldn't be able to get it in in time.  I usually call it in about 4-5 days before just in case they have to get it in...but I forgot and ordered it the day before! Luckily they got it in about 3 hours before I had to leave, whew! I can't believe how much these meds cost and how it keeps rising in price!  Then, when I got to the infusion place, it was soooo busy I had to get my IV started in the waiting room.  The company that schedules everything, clearly overbooked or didn't take into consideration the time everyone's infusions take.  The nurses were great, but clearly were being run off their feet.  They kept apologizing but I told them not to worry about it, it obviously was not their fault.  Then after my dose of the juice, I left and forgot my cold bag and had to go back but needed to get some blood work done anyway to check my Remicade levels...but it was a very eventful Remicade 1546 day.  Hopefully my next wont be.

Thursday, October 6, 2016

Crohn's and the Changing Seasons

Ahhhhh, Fall.  The change in the air, change in the leaves, change in the weather and a change in the Crohn's !!
It is this time of year I both love AND hate.  For everything I mentioned above, yes, but I hate what it does to my Crohn's symptoms.  It's like there's a switch and once it was flipped to Fall, so was my Crohn's switch flipped.
I get more symptoms and problems this time of year than any other, except maybe winter, even though generally, I'm doing well.  I'll give you an example...
This past Monday was like any other Monday, get up, go to work, come home and have a quick dinner so I can take my son to soccer practice.  That was until I ate dinner.  Nothing out of the ordinary, generally because I'm going to be out and don't want to have to go to the bathroom, but after I ate, I laid on the couch and had a quick "shiver".  Again, nothing out of the ordinary.  BUT, that one shiver led to two, then more, then I couldn't stop.  I call them "the shakes" and I get them once in awhile, but have no idea why (and neither do my doctors).  I covered my self in a blanket, then two, then my son piled the freshly dried towels from the dryer on top of me to keep me warm.  Funny thing was, I didn't feel cold.  It got progressively worse...ever try texting while shaking...don't recommend it.  I was trying to text my sons coach that he wouldn't make it to practice and possible team photo's later that night.  I put myself to bed bringing all the blankets with me and added them to the comforter and blanket already on the bed.  The shaking got (and gets) so bad, my muscles and joints starts to ache and fever and headaches kick in.  I try to keep hydrated, but that's fun to watch.  What's worse is trying to urinate while you're "convulsing"...in hindsight, I probably should have sat down LOL, but what's done is done. 
Fast forward 4 hours later, yes, 4 hours, when I vomited and almost immediately the shaking stops.  I still shook a little, but 90% better than what I was.  Now I get to deal with joint pains in my knees, hips and jaw, muscle ache in my legs and arms and THE most painful headache.
I have been through this several times over the years and have learned that once I vomit, the symptoms seem to go away.  The closest my doctors have come to figuring it out is something call "rigors" which essentially a sudden attack of severe shaking, but have no idea why.
I've even gone to hospital once when it first happened years ago and even they couldn't figure out why.
So....do I like Fall??  My senses say YES! My body says, uhhhh...NOPE!

Monday, September 26, 2016

Crohnie Quote Of The Day

Look what I found!!! 

It's a Crohns, Colitis and IBD rule book....



Yes....it's blank

Thursday, September 22, 2016

WEGO Health Activist Awards

My blog has been nominated for a WEGO Health Activist Award for "Best in Show: Blog".
I am thankful, and humbled at the same time, for the nomination.  If you would like to endorse the nomination, please go to:


https://awards.wegohealth.com/nominees/142


and click on the "Endorse" button under my picture.
I thank you all in advance, but it really IS nice to be nominated

Sunday, September 18, 2016

Crohn's and Fitness : Part 3

Just a quick update, as I haven't updated as often as I'd like, on my fitness program.
Over 2 months in and believe it or not, I' still working on core work.  Yes, that's how bad my core is.  I'm on a new set of moves now and it's slowly working.  It's amazing how small deliberate moves can strengthen your abs and back.  We're not moving to weights until the core is strong....or stronger at least.
I've had some minor "problems" with my Crohn's, like small flares, but nothing serious thank god.


Slow and steady



Tuesday, September 13, 2016

Instacrohns

 
Check out this new Crohn's community site. 
Also on Instagram, Facebook and Twitter!!
 

www.instacrohns.com
 

Wednesday, September 7, 2016

You Might Be A Crohnie

If getting out of bed and having a shower is your version of "working out"
...you might be a Crohnie



Tuesday, August 30, 2016

Remicade : Day 1498

I missed my regular infusion day by a week because I was away on holiday, so needless to say, I am tired and exhausted.  It's always amazing how my body knows when it's time for "the juice".
I seem to be maintaining my weight finally after 25 + years.  I'm able to eat and not have to rush to the washroom all the time.  Not that it doesn't happen, but it happens less often. 
I've said it before and Ill say it again, Remicade has turned my life around.  Fingers crossed it keeps working.

Sunday, August 14, 2016

Saturday, August 13, 2016

Crohn's and Weight Loss / Gain

One of the biggest things I had to go through when I got Crohn's was the drastic weight loss.  When I say drastic, it came hard and fast.  It was scary at the time and there was nothing I could do about it.  Some of it was the disease itself I think, but also I just stopped eating.  It hurt way too much after I ate.  I had dropped so much weight, at one point a stranger on the street asked if I had AIDS.  Keep in mind, this was the late 80's and AIDS was a big "thing" then.  That comment hit hard for me and I didn't want to go outside anymore.  I didn't want anyone to see me.
So to give you an idea about how I WAS...before I was diagnosed I was a competitive figure skater and I played soccer as well.  I was fit and strong, thick thighs and such a tight ass (just sayin)  I weighed 165 pounds (11.7 stone or 74.8 kilos) at 5' 10", I looked great and "healthy".
By the time I had my first surgery I weighed a mere 115 pounds  (8 stone or 52 kg).  I was skinny enough that the surgeons were a little concerned about doing the surgery, but it was an emergency at the time.  I had a grapefruit sized matting of the intestines.  That was 1989....
It has taken me to 2016 to get my weight back up, I am now 160lbs, almost to my original weight.  Gone are all the muscle I had, Crohn's had them for a snack after it ate all my fat, but thanks to Remicade, it has slowly gone up and has stayed there for a few months now.
I hope to keep it as I have started working out.  With the help of my trainer I'll get there.
I want my muscle back, not to mention my ass!!

Wednesday, August 3, 2016

Crohn's and Fitness : Part Two

Well, just an update on the "program" I'm on. 
It's been a month and surprisingly everything is coming along well.  I say "surprisingly" because honestly, I was expecting more pain and fatigue then I am experiencing.  I still feel it, don't get me wrong, I was just expecting it to be worse.
My trainer, Kristine, is great.  She keeps me focused and is quick to correct my positioning and posture. We're working on my core, shoulders and hips but also working the glutes and chest.  The only equipment I use is a resistance band and a lacrosse ball for massaging the muscles.  Who knew pulling on a large rubber band and rolling a lacrosse ball along a wall actually works.  No need to spend hundreds of dollars on fancy equipment.  The ball really works on getting the kinks out and nicely massages the muscles to loosen them up.  She knows her stuff and constantly asks how things are going during the session so not to "hurt" myself.
Between sessions, I workout at home and the challenge is to remember to DO IT !!  And for the past month, I HAVE been.  There's a lot of self motivating and I've been making sure I do the exercises either everyday or every two days.  Starting next month, we're going to change it up as she puts it, but I don't know what that is yet.  But for the next month, going to keep it up.
My goal for now is to be "Fit by Fifty", which is my 2 year plan, and get back to my athletic physique.
I'm going to get there.....health willing.


Slow and steady wins the race

Tuesday, July 19, 2016

You Might Be A Crohnie

If your veins are as hard to find as the Invisible Man
... you might be a Crohnie

Thursday, July 14, 2016

Remicade : Day 1404 Happy Crohn-aversary!!

Had a quick infusion yesterday, but wow did I feel it afterwards.  I wanted to curl up in a ball and just sleep....but I had to drive home still, so THAT would be awkward.

Then I realized as I was slowly nodding off, that it has been 4 years now of Remicade infusions.  I can't remember the exact amount now, but in the 30's I think.  AND it's just over 28 years since my "official" diagnosis.  I had been having symptoms months before, but a doctor finally gave what was happening to me a name.  And when he told me that name, I was like "huh??" because I had never heard of Crohns before that date.

So, Happy Crohn-aversary to me!!  Now let's eat cake !

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Monday, July 4, 2016

Crohn's and Fitness

I've always been afraid to workout since my surgeries.  Maybe it's because the surgeons cut through the abdominal muscle and not along it, so I'm picturing doing a crunch and my insides rip open spilling my intestines out all over the floor....or...maybe it's the lack of energy I have ALL the time, along with the dehydration, and as I'm working out, pass out and fall over a machine, spilling my intestines out all over the floor.....or....maybe...

I could keep going on and on with excuses why I haven't, or don't workout, but this is a new day.  On Wednesday I turn yet another page on my journey with Crohn's Disease.  I decided after my 48th birthday that I would put in motion a 2 year plan to get fit.  I don't need to lose weight, I want to get my strength back.  Maybe not to the point of my figure skating days, but....fit.
I found a trainer that works with people like me. You know, those of us that have limitations, and I'm going for it.  I have an assessment on Wednesday so she can see range of motion, etc. and she will design a program for me that's basically strength and conditioning.  I described it to her as, "picture me as an athlete that's trying to recover from an injury" and take it from there.  Slow at first, which is why I gave myself a two year plan.  If everything goes well, we'll move on to the weights and pumping iron, but one thing at a time.

Slow and steady wins the race

Wednesday, June 29, 2016

You Might Be A Crohnie

When your peri-anal abscess is only the size of a quarter, but FEELS like a watermelon
...you might be a Crohnie


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Friday, June 17, 2016

You Might Be A Crohnie

If your version of multitasking is farting without crapping yourself
...you might be a Crohnie

Wednesday, June 8, 2016

You Might Be A Crohnie

If the airport security asks, "Can I look in your bag?" and you lift your shirt
...you might be a Crohnie


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Saturday, June 4, 2016

100,000 Thank you's !!

Signed in to my blog this morning to write about my Remicade infusion, day 1410 by the way, and noticed that my little blog has surpassed the 100,000 view mark.  WOW!!  It's a great feeling that it's reached so many out there, bringing our big world together.  It's like I just won an Academy Award!
So, keeping to that theme...


WOW!! Okay. So here I am. I know everyone says they’ve dreamt about this moment since they were a kid or whatever, but I never did really.
Anyway, let me catch my breath for a second... whew.  There are a lot of people I would like to thank that helped me on this journey, from the local Tim Hortons that supplied the coffee and donuts, to my incurable invisible disease that was my muse and the reason for all of this.


But honestly I'd like to thank everyone that came by my blog for a visit.  It started out for me to vent and to share my experiences battling Crohn's...and add a little humor...maybe, just maybe mind you, help others who are going through the same battles.  Even if it helps one person, then I'm happy.
My sister-in-law suggested I start writing in 2009 and here we are, 7 years later and over 100,000 views.  I'd also like to thank Healthline.com that have recognised this blog since 2013 as one of the top Crohns Disease blogs.
To say the least, I'm extremely humbled.
Thanks to everyone who have come by for a visit and a read.  And to those that have shared, commented and/or contributed to Leaving the Seat Down.
But most of all, I'd like to thank my friends and family who have encouraged me but also have endured my ups and downs over the 28 years of my battle with Crohn's, especially my wife.


I thank you all sincerely from the bottom of my heart.

Wednesday, June 1, 2016

Calling All Crohn's Tattoos !!

Healthline.com is once again compiling a list of Crohn's inspired tattoos and want you to add yours to their list.
 All people have to do is send in a clear photo of their tattoo +  short description, with the subject “My Crohn's Disease tattoo,” to nominations@healthline.com – they’ll then feature them on the site!


I'm submitting mine....will you..?


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Wednesday, May 25, 2016

Toilet Paper VS Bath Tissue : Part 3

So... further to my calculations, let's go for distance, shall we...
Over my 28 year fight with Crohn's Disease,

-5110 rolls x 425 sheets = 2,171,750 sheets of toilet paper (77,562 per year)

if each sheet is approx. 10cm in length, then...

-425 sheets x 10cm = 4250 cm (1673 in)
-each roll is approx. 42 meters (139 ft)

so....

-5110 rolls x 42 meters = 214,620 meters of toilet paper (704,134 ft)
-214,620 meters = 215 kilometers (134 miles) of toilet paper in 28 years.....approx.

That's like driving from Vancouver, BC to Seattle, WA !  (almost)

Saturday, May 21, 2016

New Biologic Treatment In Canada

May 19th was not only World IBD Day, but The Crohns and Colitis Foundation of Canada announced the government approval of a new biologic, ENTYVIO (vedolizumab), for use in Canada.


http://www.takedacanada.com/media/news-releases/2015/entyvio/


We're getting closer....


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Tuesday, May 17, 2016

World IBD Day - May 19th

Thanks to CCFC

 
Wear Purple to show support on Thursday May 19th !!

.

Sunday, May 15, 2016

Toilet Paper VS Bath Tissue : Part 2

I thought I would add to my toilet paper calculations....
If there are 425 sheets per roll, then over my 28 year battle with Crohn's...


-5110 rolls x 425 sheets = 2,171,750 sheets of toilet paper (77,562 per year)
-each sheet is 11.5cm x 10.1cm = 116.15 sq cm's (4.5in x 3.9in = 17.55 sq in's)
-2,171,750 total sheets x 116.15 sq cm's = 252,248,762.5 sq cm's (38,114,212.5 sq in's)


To give you an idea, that's about 54.5 million.... postage stamps!!
Thanks goodness toilet paper isn't as sticky!


Just some "fun facts"


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Wednesday, May 11, 2016

Toilet Paper VS Bath Tissue

So....I was sitting in the bathroom, like I frequently do, and started to think...is it toilet paper or bath tissue?  I know, what a weird thing to be thinking about at that moment in time, but I do some of my best thinking whilst "going".  Let's face it, we Crohnies spend a hell of a lot of time in there.
Most people call it TP or toilet paper here in Canada, but then why does the packaging say, Bath Tissue.  The only thing I could think of was that it was "more polite" while it sits on the shelf.  Honestly, I couldn't give a crap WHAT they call it.  Ha ha ha, I couldn't "give a crap"  (that's funny) but then I started thinking...I wonder just how much toilet paper I've used since my diagnosis?  hmmmm, well let's see.....


-there are 365 days in the year and I go through, on average, 1 roll every 2 days = 182.5 rolls/year
-I've had Crohns for 28 years = 182.5 x 28 = 5110 rolls
-average 36 rolls per pack = 142 packs
-average $20 per 36 roll pack = $2840 spent in toilet paper since having Crohn's Disease.


This of course is just an estimate, but gives a sense of how much I use...and also a sense of how bored I get.
.

Thanks Healthline.com !!

A huge "Thank you" goes out to Healthline.com for voting my blog one of the Best Crohn's Disease Blogs of 2016.  It's an honour for me to be recognized in this way.
After 28 years of living with Crohn's, I try to bring some information as well as some humor and honesty to a disease no one really likes to talk about.  And to be placed in such a fantastic group of other blogs....wow!


Thanks again, I truly appreciate this honour.

Wearable Art Collections - Checkers

Here are some of my Checkers collection featured on VIDA
http://shopvida.com/collections/voices/vern-laine




Men's Silk or Cotton Pocket Square

Modal Scarf


Cashmere Modal Scarf
Men's Silk or Cotton Pocket Square
Cashmere Modal Scarf
Silk Square Scarf
Cashmere Silk Scarf
Cashmere Modal Scarf
Men's Silk or Cotton Pocket Square

Cashmere Modal Scarf
Cashmere Silk Scarf
Cashmere Silk Scarf

 






 

Sunday, May 8, 2016

Remicade : Day 1336

Do you ever have those days where you really feel old?  In the 28 years of having this disease, I feel old everyday.  The aches and pains, tired and exhausted and the constant bathroom breaks, but at my last infusion it was re-enforced.
Another patient was getting infused and we got to chatting about when we were in school and how things were.  You know, when you say, "hey, do you remember......", it was all good until he said that I might not remember because I'm older than him.  I asked how old he was and he said 50.  I smiled and gave a quick chuckle and said, well I'm only 47.  Really?  he said.....but you have all that grey hair. 
Turns out, that I've been going grey since I was 18 and no, I didn't run out to the drug store next door to get Just For Men to color my hair, but it goes to show how people automatically judge you or assume something about you, just by your appearance.  Got me thinking about how people like "us" are judged by our appearance, or lack there of, of illness.
Makes ya think....

Wednesday, May 4, 2016

Wearable Art Collections - Mozart

Here are some of my Mozart Music collection featured on VIDA


http://shopvida.com/collections/voices/vern-laine


Cashmere Modal Scarf


Cashmere Silk Scarf



Modal Scarf

Silk Square Scarf


Wearable Art Collections - Fire and Ice

Here are some of my Fire and Ice collection featured on VIDA


http://shopvida.com/collections/voices/vern-laine


Cashmere Modal Scarf


Cashmere Silk Scarf


Men's Silk Pocket Square


Modal Scarf

Men's Cotton Pocket Square


Sleeveless Top


Tuesday, May 3, 2016

Crohnie Quote Of The Day

Happiness is......


      when your abscess let's go all on its own




Sunday, May 1, 2016

You Might Be A Crohnie

If you can tell when they change the toilet paper... just by the feel of it
...you might be a Crohnie
.

Wednesday, April 13, 2016

Crohn's Vaccine...?

I was made aware of an article from the Edinburgh News from February of this year,


http://www.edinburghnews.scotsman.com/news/health/vaccine-hope-to-cure-crohn-s-disease-1-4032099


God knows we need a cure and it looks as though things are going in the right direction, hopefully.  I'm not totally convinced about cow's milk being a "cause" as I was brought up on goat's milk as a baby, but I'm definitely intrigued at the possibility of a vaccine......for my kids sake not mine.


Also check out


https://www.facebook.com/crohnsmapvaccine/?ref=bookmarks


Fingers crossed.....

Sunday, April 10, 2016

Friday, March 25, 2016

Make Your Illness Your Friend

I know that having Crohn's sucks, I mean really sucks!, but in order to live, you basically have to make the disease your "friend" and live together.  Like any relationship, you're going to have your ups and downs, but there are days that everything is calm. And there will be days that you will hate each other.

Give up the "but."  You know, the "I want to go out, BUT I can't cuz I have Crohn's".  Don't get me wrong, there will be days that you just "can't" because of your illness.  There's a difference. You have to just do it sometimes.  Even if you're feeling a little bit "fine", take that opportunity.


Accept reality.  You have an incurable, chronic disease.  Until there is a cure, you need to live with it and do what you can do make it livable.  It took me years before I accepted the reality that there wasn't much I could do about it.  I could watch what I ate and could "control", sometimes, the symptoms, but not all the time.  When the flare comes, it comes and when it does, deal with it the best you can.  If curling up in a ball is it, then do it.  When the symptoms pass, you get up, brush yourself off and continue on.  If not, it will smother you, take control and consume you.


Like the song by Chumbawamba - Tubthumping


I get knocked down
But I get up again
You're never gonna keep me down

Wednesday, March 16, 2016

Remicade Day : 1332

I've been sick with a "simple cold" for the past few weeks coughing, headache, stuffed up, etc. so I thought going in to the clinic that my weight would be down....hmmmm, wrong!
I stepped on the scale only to find that I had actually gained 4kg's !!  (that's 8 lbs)  I was shocked.
This Remicade is working great for my Crohn's so far.....except for that nagging, annoying, irritating peri anal abscess thingy.  Once you get past that, then all good. 
I still miss my old body, the one that use to figure skate 5 days a week and soccer twice a week.  I'm resigned in the fact I will probably never get that again, but who knows, I should start working out.  I would have to start off slow and easy, like I had a sports injury or something, but we'll see.

Monday, March 14, 2016

You Might Be A Crohnie

If you have all the ingredients memorized on the bottles in your bathroom
...you might be a Crohnie

Thursday, March 10, 2016

Wearable Art

I have added my artwork to clothing and have started with women's silk scarves

http://shopvida.com/collections/voices/vern-laine

Hopefully I can add more clothing as well as artwork.

Tuesday, March 1, 2016

You Might Be A Crohnie

If the question, "how are you feeling?", is THE most difficult question in the world to answer
...you might be a Crohnie

Thursday, February 18, 2016

It's Just A Cold...

When I use to hear this from people that didn't understand my "predicament", I would go in to a long spiel about how I have Crohn's and there never is "just a cold" anymore.
Today when people say it to me, I just roll my eyes, shake my head and smile...sort of.
I wish I could "just have a cold" like I use to 30 years ago, gone are the days of catching a cold and take some medicine.  The cold medicines that use to help me now cause me problems, either with pain, discomfort or major diarrhea.
I caught a cold the other day and I had a sore throat that felt as though something was stuck in there;  my voice sounded like Barry White.....only deeper; a headache, but the sharp ones behind your eyes; runny nose, like a tap; cough that I feel in my chest, back and causes pain in my abdomen each and every time; muscle and joint pain that makes me feel like I'm 97 instead of 47; and dehydration that takes the wind out of me each and every time walking up stairs and, well.....just walking.
So, no, it's not just a cold.  Maybe for all the "healthy" people it's just a cold, but maybe think twice before telling someone else, it's just a cold, you have no idea what a cold is.

Sunday, February 7, 2016

You Might Be A Crohnie

If your trigger food is.....well.......food...
you might be a Crohnie

Tuesday, February 2, 2016

You Might Be A Crohnie

If getting out of bed is one of the highlights of your day...
you might be a Crohnie

Wednesday, January 27, 2016

Remicade : Day 1282

It's funny, when you see 1282 days, it doesn't look like a lot.....but when you convert it to years, it's 3 1/2 years!  Certainly doesn't feel like it that's for sure.
But after all this time getting treatment sitting in those chairs, getting poked and juiced up and reading my iPad, I came across yet another Crohn's patient passing away from complications to this god forsaken disease.
It doesn't necessarily mean that I'm going to die from it, but there is always the possibility I guess.  I know I will be at a higher risk for colon cancer or lung disease and as I age, there's the risk of malnutrition.  Then again....anything can happen at any time no matter if you have a disease or not. 
I thought of my wife and kids and how they would be when I'm gone.  Then I thought about how many days, outings and trips I've missed because of my Crohn's.  So maybe I should make each day count we spend together, whether that be having dinner together, watching a movie or reading a book together. #makeeachdaycount
Then after all that "thinking", my infusion was over and I thought, you do an awful lot of thinking while sitting in a leather Lazy Boy.







Tuesday, January 26, 2016

Protein Bars


Finally found a protein bar that doesn't cause me any discomfort or pain. I found them at WalMart and Costco here in Canada.



Saturday, January 16, 2016

What Happens In Vegas.......

My wife and I just returned from a great trip to Las Vegas and it got me thinking how much more difficult it is for me to prepare for a trip compared to a "normal" person.  I have to think days ahead and prepare for what "could" happen as apposed to just getting on a plane and go on vacation.


Prior to leaving, I need to make sure I have all my meds in place, making sure they remained in the original bottles as they could be confiscated at security if they are not.  I also have to get extra travel insurance, just in case.  Insurance for those of us with pre-existing conditions, it only costs an extra $25, so worth every penny. The morning we left, I didn't really eat, just a little bit of my wife's muffin and a little water.  I don't want to have to have any problems before getting on the plane or on the plane.  I would rather not eat, then have to "worry".  I repeated the routine on the flight home as well.


Now, while in Vegas, it's not as bad because if I have to get to a washroom fast, there are plenty of public washrooms around, in the hotels and on the strip itself, so good on Vegas for that.  If you're like me though, I'm not fond of the public washrooms, our hotel room was not far.  We stayed at Caesar's Palace (great hotel).  Each day was planned, where most people just head out, if we were going to be out for a long period, I didn't eat, but we didn't go too too far.  We saw Cirque du Soleil's LOVE the first night (great show)...the show starts at 7, so we had dinner at 4 so I had time to go to the bathroom prior to the show.  I highly recommend Gordon Ramsay's Pub and Grill in Caesar's Palace.  I took power bars with me just in case, but never ate one. 
Breakfast the next day was at Mon Ami Gabi at the Paris Hotel, highly recommend as well, but instead of having what I wanted, I had to think what we were doing after breakfast, which was walking the strip and shopping, so I had French Toast with fruit, simple.  We had dinner at 4 again at the Bellagio Buffet because we were going to see Celine Dion at 730, again, giving me time.  With the hundreds of selections of food, I still can only eat a small amount of what's available.  I should say, I can eat whatever I want, but not if I pay for it later. The next day was breakfast at Terrance Point Café at the Wynn, highly recommend again and then at Gordon Ramsay's Pub and Grill around 4pm as we were at another show for 730, Terry Fator and the Mirage, another great show.
We were leaving the next day and repeated my routine for flying as when arriving.


All in all, I wish I could have had more to eat and I would have loved to have some drinks, but this is my life now and the life of a Crohnie sometimes.  I need to think ahead to avoid problems and to enjoy myself.  Drinking lots of water helps make me feel full.  My wife ate and drank whatever she wanted to and I love her for that because why should she suffer because of me.  I don't feel I lost anything and we had a wonderful time in Las Vegas.  I personally recommend Caesar's Palace for the rooms, staff, restaurants, shopping, shows and overall cleanliness.  Some of the hotels we walked through smelled liked we were walking through an ashtray full of sweat, so disgusting.