Monday, December 30, 2013

The Most Wonderful Time Of The Year.....???

I love and hate this time of year.  Don't get me wrong, I love Christmas and everything that goes with it, except it is this same time of year that my Crohn's wants to give me a 'present'.  It's a present I don't want.
Every year, something goes awry with my Crohn's.  This year, I ended up in the ER with a peri-anum abscess which they were able to drain without major surgery.  Still had to be put out in the ER and had problems sitting for about a week, but why o why does this happen every Christmas?  I've been racking my brain for years trying to figure it out and the only thing I can come up with is that it's the stress.  Too much 'stuff' going on this time of year.  Too much to 'worry' about.  Kids, work, family, food, etc., etc,.
Everything seems to have settled now.  Or is it just dormant, ready to rear it's ugly head next Christmas........

Tuesday, December 24, 2013

Crohnie Christmas

I posted this a couple of years ago and I thought I would do it again.
Merry Christmas to all my IBD family!!


Don't know who wrote it, but I give them two thumbs up.  And there is a language warning before you read......but enjoy!

'Twas the night before Christmas and everyone waited with glee
Except for the one in the bathroom-I have CD.
The Charmin was hung by the toilet with care
In hopes that I'd reach it before ruining more underwear.
I started at night when I was snug in my bed,
Those rumblings I heard were not in my head.
I'd been looking forward to a long, restful nap
But had to get up for a much needed crap
When out on the lawn, there arose such a clatter,
I exited the crapper to see what was the matter!
I opened my door, and it hit like a flash…
This god-awful stench-I fell on my ass.
I opened my window and threw up in the snow
It covered the nativity scene down below.
And what to my bloodshot eyes should appear
But a miniature sleigh with some tiny reindeer.
A decrepit old driver, not lively or quick,
I knew in a moment it must be St. Nick.
Slowly-with effort, those reindeer, they came
As he whistled and shouted and called them by name:
"Now, Crohn's! Now, Colitis! Now J-Pouch and Ostomy!
On, Hemorrhoid! On, Fissure! On, Stool O Bloody!
To the top of the house, to the top of the wall!
Now dash, little bastards, and don't let me fall!"
And then, in an instant, I heard on the roof
The scratching and farting of that big, ol' dumb 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 red, from his head to his toe,
And he smelled like hell…he really had to go.
A bundle of toys he had flung on my couch.
He winked at me and said, "Wanna see my J-Pouch?"
His eyes-how they twinkled as he let out a fart.
It smelled worse than mine-nearly stopped my dear heart!
His droll little mouth was drawn up like a bow,
If not for the beard, it'd resemble an @#%$!
The bags under his eyes-I saw the fatigue
That comes from living with Crohn's or UC.
Plus a bad case of D had filled his round belly,
And shook when he farted-it was oh, so smelly.
He was chubby and plump; he screamed at his elf.
I laughed when I saw this, in spite of myself.
The moon face, the mood swings-the twitch of his head,
I knew right away…side effects of the Pred.
He spoke not a word, but went straight to the bathroom
And filled my toilet with a *splat* and a VVVAROOOMMMMM!
Using his finger to close up his nose,
And giving a nod, up the chimney he rose.
He sprang to his sleigh; he weighed ten pounds less.
And thanking me for the Charmin, he apologized for the mess.
As I heard him cry out, I realized he knew of our plight:
"HAPPY CHRISTMAS!
"I'VE IBD TOO, AND I'M HAVING ONE HELL OF A NIGHT!"

Friday, December 20, 2013

12 Days Of A Crohnie Christmas : Day 12

On the twelfth day of Christmas, my Crohns Disease gave to me.........
...12 rolls of toilet paper,

11 packs of underwear,
10 visits to the ER,
9 blood tests,
8 B12 shots,
7 different doctors,
6 Remicade infusions,
5 fistulaaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses

and a painful colonoscopyyyyyyyyyyyyyyyyyyyyyyyyyyyyy!

Merry Christmas!!!

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12 Days Of A Crohnie Christmas : Day 11

On the eleventh day of Christmas, my Crohns Disease gave to me.........
...11 packs of underwear,

10 visits to the ER,
9 blood tests,
8 B12 shots,
7 different doctors,
6 Remicade infusions,
5 fistulaaaaaaaaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

12 Days Of A Crohnie Christmas : Day 10

On the tenth day of Christmas, my Crohns Disease gave to me.........
...10 visits to the ER,

9 blood tests,
8 B12 shots,
7 different doctors,
6 Remicade infusions,
5 fistulaaaaaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

Thursday, December 19, 2013

12 Days Of A Crohnie Christmas : Day 9

On the ninth day of Christmas, my Crohns Disease gave to me.........
...9 blood tests,

8 B12 shots,
7 different doctors,
6 Remicade infusions,
5 fistulaaaaaaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

Wednesday, December 18, 2013

12 Days Of A Crohnie Christmas : Day 8

On the eighth day of Christmas, my Crohns Disease gave to me.........
...8 B12 shots,

7 different doctors,
6 Remicade infusions,
5 fistulaaaaaaaaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

Tuesday, December 17, 2013

12 Days Of A Crohnie Christmas : Day 7

On the seventh day of Christmas, my Crohns Disease gave to me.........
...7 different doctors,

6 Remicade infusions,
5 fistulaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

Monday, December 16, 2013

12 Days Of A Crohnie Christmas : Day 6

On the sixth day of Christmas, my Crohns Disease gave to me.........
...6 Remicade infusions,

5 fistulaaaaaaaaaa's,
4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

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Sunday, December 15, 2013

12 Days Of A Crohnie Christmas : Day 5

On the fifth day of Christmas, my Crohns Disease gave to me.........
...5 fistulaaaaaaaaaa's,

4 kidney stones,
3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.

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Saturday, December 14, 2013

12 Days Of A Crohnie Christmas : Day 4

On the fourth day of Christmas, my Crohns Disease gave to me.........
...4 kidney stones,

3 bone density tests,
2 peri-anal abscesses
and a painful colonoscopy.


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Friday, December 13, 2013

12 Days Of A Crohnie Christmas : Day 3

On the third day of Christmas, my Crohns Disease gave to me.........
...3 bone density tests,

2 peri-anal abscesses,
and a painful colonoscopy.


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Thursday, December 12, 2013

12 Days Of A Crohnie Christmas : Day 2

On the second day of Christmas, my Crohns Disease gave to me.........
...2 peri-anal abscesses

and a painful colonoscopy.


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Wednesday, December 11, 2013

12 Days Of A Crohnie Christmas : Day 1

I normally do a Crohnie advent calendar, but this year, I'm doing a "12 days" instead.....

On the first day of Christmas, my Crohns Disease gave to me.........
...a painful colonoscopy.



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Sunday, December 8, 2013

Struggling With Crohns ??

I get asked about how I handle having Crohn's.  The day to day, the not knowing, the pain, the frequent bathroom visits, the this, the that.
Honestly....sometimes I just want to sit and do nothing, but I know I have to get up and get going and not let the Crohn's take over.
In the beginning of my "journey" I just wanted to give up, but learned over time, that it's just one step at a time.  They are small steps, but steps all the same.
Or as this video shows.....one foot in front of the other.

http://youtu.be/OORsz2d1H7s

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Remicade : Day 497

I arrived for my infusion early, as I always do, but this time there was no one in front of me, so I got hooked up early.....awesome.
It's cold here so before I left, I heated up my hand and put gloves on.  Then when I arrived, I put my hand under a heating blanket....made my veins pop right out...awesome again.
Then I found out this infusion was lucky #13, so instead of bad or weird things happening, it was one of the best infusions.  No problem with the IV needle, quick infusion, no worries.


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Tuesday, December 3, 2013

Crohnie Quote Of The Day

You know your medication is expensive when even the pharmacist looks at the price and goes, "Whaaaaaaat??!!!"



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Wednesday, November 27, 2013

Crohn's and Star Trek

You might be asking yourself what has Crohn's got to do with Star Trek?
Well, I was watching Star Trek Next Generation and started to laugh at the end of the opening monologue where they say..."to boldly go where no one has gone before"...
I laughed because "to boldly GO..", so of course, being who I am, I automatically thought of going to the bathroom.
So, I came up with my own monologue for me and my Crohn's.....in the context of Star Trek,,

Crohn's, The Inflammatory Bowel Disease
These are the experiences of the Crohnie, Vern
His ongoing mission
To explore strange new bathrooms
To seek out new toilets and new bidets
To boldly GO where no one has gone before....

(insert music here)

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Sunday, November 24, 2013

Crohn's Survey

Hey there fellow Crohnies.  A fellow Crohnie in the UK is  creating a program for women living with chronic bowel disorders and would like you (women) to fill out a survey to help.

"I am a life coach and am creating a 6 month program designed for women living with chronic bowel disorders who have lost their mojo along the way! (Loss of femininity, sexuality, body confidence, ability/desire to be physically intimate for example)
I have had Crohn's for 25 years, pretty bad for the most part. I have battled with depression, low self esteem, poor body image, low sex drive, problems with intimacy in relationships etc etc for many years due to the effects of the disease.  A lot of it boiled down to a lack of information and support.   Luckily, past 2 years on Humira, finally well. "

Here's her link...

https://www.surveymonkey.com/s/Getyoursexyback

Thanks Sasha...good luck!


 

You Might Be A Crohnie If...

If you have 101 different positions to sit on a toilet...
you might be a Crohnie.


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Saturday, November 9, 2013

You Might Be A Crohnie If...

If you say the phrase "ahhhhhh, shit!" and mean it, literally...
you might be a Crohnie


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Thursday, November 7, 2013

You Might Be A Crohnie If...

If the only thing about your colonoscopy you worry about is whether the video will go viral...
you might be a Crohnie



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Monday, November 4, 2013

Colonoscopy Results...Something To Think About

Had my Gastro appointment today and we discussed the results from my colonoscopy back in September.
The usual chit chat about how I am, have I been taking my B12 shots, etc.  I didn't know that if my toes and fingers get a tingling sensation, and I'm low in B12, it's possible to have that feeling permanently.  Then the results...apparently they had to double dose me on the meds to put me in a deeper sleep.  When she tried to go in with the amount of inflammation I have, I was uncomfortable and she gave me more.  That explains why I have absolutely no recollection of coming home from the hospital that day.  I was put out and I awoke at home. 
So, she got past the inflammation and hit more inflammation at about 10cm, got past that and it was clear until about the 20cm mark where she had a bit of trouble but got past that, then all clear.
It's the two points of inflammation she's concerned about and maybe she thinks it would be best to remove it all and have "the bag".
"The bag", the two words many of us crohnies dread to hear.  She believes that it would be the best thing, even though it's not "needed" right now.  I will need to go for the sigmoid-oscopies every year to double check the inflammation, but "the bag" is on the table.
At my age, it might be time to seriously think about it....


........something to think about.


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Tuesday, October 29, 2013

Crohn-fucius Say...

Crohn-fucius say... when the goin' gets tough, have a liquid diet and lay on the couch



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Thursday, October 24, 2013

Crohn's-Inspired Tattoos

Check out these inspiring Crohn's tattoos at healthline.com

http://www.healthline.com/health-slideshow/crohns-tattoos#1

cool!


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Infusions

I have found since my infusions started over a year ago, that I get very tired afterwards.  It lasts for a few days, has anyone else found this??
I like the fact the infusions are working and am no longer taking meds everyday (except for 3 pills at night), but don't like that I'm bagged afterwards.

You know you're tired when.......you're too tired to even play Candy Crush.


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Wednesday, October 23, 2013

Remicade : Day 456

Lady Remicade still going strong throughout my body.  After my last colonoscopy 6 weeks ago, my abscesses "disappeared" and started to reappear just the past few days, which is nice.  I mean, not have to worry about it and not worry about the pain.  6 weeks til the next infusion.  Maybe I'll take me camera this time so you can see just how small of a room it is.....

Tuesday, October 22, 2013

Artwork

New artwork from 'the studio'

I went a little different than my usual and combined acrylic, oil and spray paint and came up with

Cities




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Sunday, October 20, 2013

Blood Test For Crohn's???

They have discovered a simple blood test for determining whether you have IBS or IBD.  Could it be soon they will have a test for Crohn's? 

Too late for me.......but maybe for my children.

One step closer....

http://truthdive.com/2013/10/17/Simple-blood-test-could-help-millions-suffering-from-IBS-and-IBD.html


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Friday, October 18, 2013

Crohnie's VS Non-Crohnie's

Please, please, pleeeease.....if you DON'T have Crohn's Disease or IBD, then don't say...

"I know what you're going through"

Because I am here to tell you, you have no friggin' idea !!
Just because you have an upset stomach or you have some diarrhea ??  really!?
Uhhhh...it's NOT the same, sorry.
Throw some pain in there, like the kind of pain that makes you curl up in to the fetal position, AND having diarrhea, 10-15 times.....in an hour.....AND never knowing when you will end up in hospital at any moment...
....then, maybe, you're about a tenth closer to  "knowing what I'm going through"

So, no offense, but think before you speak!

....peace


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Monday, October 14, 2013

Crohn-fucius Say...

Crohn-fucius say... how does a Crohnie avoid eating turkey at Thanksgiving?

......he eats ham.



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Saturday, October 12, 2013

The Gut Microbiome

A few days ago I received an email from Kei Fujimura asking about doing a video conference regarding my Crohn's.  She's a PhD at the University of California San Francisco in the Division of Gastroenterology.
If she contacts you, please help her out and answer just a few questions on your Crohn's or IBD.  She's trying to understand "customers needs" when it comes to IBD patients.  It was a pleasant conversation and only 15 - 20 minutes long.
Any help with IBD will go a long way!!

Thanks Kei!

Wednesday, October 9, 2013

Crohnie Quote Of The Day

I have Crohn's, but I figure that it's just using my body, hitchin' a ride for a while....until something better comes along.


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Tuesday, October 8, 2013

Friday, October 4, 2013

Wednesday, October 2, 2013

Filtered Water

You know, Brita should hire me as a "brita barometer".

Simply by drinking water, I can tell when it's time to change the filter.  After 20 years of drinking only filtered water, my Crohn's will start acting up when the Brita filter has stopped working and I'm basically drinking straight tap water.  Generally, the filter says it should be changed every 2 months.  Well, not in this house.  We use the water so much, that it needs to be changed at least once a month.  No need to mark it on the calendar or adjust the dial showing which month it needs to be changed.....just ask me and my Crohn's. 

It knows....it always knows.



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Monday, September 30, 2013

Girls Don't Poop......Really?!

WHAT!??  Girls poop???  Really?!!
LOL!  Couldn't resist

Saw this and couldn't help BUT post the link.
It's an actual product at www.poopourri.com or www.poopourri.ca

Have a look at this........

http://youtu.be/ZKLnhuzh9uY

Don't know if I would ever use this, but...there it is.
What will they think of next.......



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Thursday, September 26, 2013

Crohnie Quote Of The Day

Saw this on Twitter and all Crohnie's can take this to heart, I think....

When things seem dark, take heart: What is embarrassing, painful, or horrifying now will make a great story in the future.


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Thursday, September 19, 2013

Crohn-fucius Say...

Crohn-fucius say... the pain is all in your head..(bwwaaahaaahaaaahaaaa, ya right!!)



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Sunday, September 15, 2013

Remicade : Day 414

I forgot to update my Remicade journey last Wednesday.
In my defense, I had a colonoscopy on the Tuesday, then the infusion on the Wednesday, so I've been pretty tired......plus yesterday was my wedding anniversary, 11 years.
The infusion went well this time, no worries about the IV, like I usually do.  Slipped right in to my hand, no problem.  But, I'm assuming because of the colonoscopy the day before, I was sooooo tired and struggled to stay awake during the infusion.
I'm normally very tired the day or two following the infusion, but this time was two-fold.....but still have to go to work.  Thank god I don't operate heavy machinery.
The other thing I noticed, is that the abscesses seem to be going down....finally!
All in all.....a good infusion this time. (knock on wood)

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Friday, September 13, 2013

Crohn-fucius Say...

Crohn-fucius say...Better a diamond with a flaw than a pebble without.

Wednesday, September 11, 2013

Colonoscopy 101

What is involved for a colonoscopy you ask..?  Simple version..?  They knock you out and shove a camera up your ass......done.
Realistically..? 
You arrive for your appt. at 720am when your appt. isn't until 830am simply because you don't want to be late.  You check in and register and get your fancy dancy plastic wrist band that you can easily slip off your wrist if you change your mind at the last minute....  you sit in chairs waiting for your name to be called.
Your name is finally called and go behind the large doors and led in to a room and told to strip down and put on the fashionable "blue?" gown and then are led to the fancy chairs with a warm blanket awaiting the nurse.  After a thousand questions, in goes the IV and then some more waiting for your turn....9am you finally get your long awaited turn.  You get led in to the room where 6, yes 6 nurses and techies are waiting, along with the doctor.  So, of course you have to joke, "how long IS this camera that it takes 6 of you to hold it?!!" 
In a matter of minutes, you're on the table, hooking you up to the monitors, oxygen tube on your nose, then your doctor comes up beside you to start injecting the meds.  She makes some small talk about how the Remicade is working and you say "great"....starting to feel relaxed now.....she then makes the comment, you know, I was going through all the paperwork and I've been your Gastro since 1990?!..."yep" you say....she then says have a good sleep and just before you go under, you say....."just make sure I wake up"....you will she said....................

About an hour later you're awake, wife by your side, paperwork in hand.  Takes a few minutes to awaken, but dressed and out the door, groggy as hell.  You don't even remember the ride home.  Took the day to recover properly and I'll find out the results in Nov.  But the paperwork I do have says she got in about 20cm (8in) before inflammation, which in my case, is fantastic.   In 2011, she couldn't even get past my rectum (from inflammation), so even getting inside was an accomplishment.

The good thing on the paperwork is that it states, "inflammation with clearing"

Remicade seems to be on the right track.


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Tuesday, September 3, 2013

The Hippie, Hippie Shake

Interesting night last night......

Had a good day, went shopping with the family and then bowling (my 8 year old beat me), had my dad over for a BBQ, then it went downhill from there.
After dinner I went upstairs to the bathroom, as all Crohnies do, came down and I started to get the shakes.  It feels like shivering, like I'm cold, but I'm not.  I made a hot drink and tried to relax with deep breathing as I laid on the couch.  That was about 6pm.....
It progressively got worse and the shakes started to turn to more like convulsions and my teeth started to clench as well as my body.  This happened before and I remembered that I threw up.  Once I threw up, the shakes went away....but I had a fever and my heart was racing.

So....I waited....

Sure enough, about 3 hours of shakes later, I threw up.  Almost immediately my shakes ended, but not completely.  I threw up again about an hour later and the shakes stopped, but now I had a fever of 103F and a pulse of 160, not to mention now my jaw, knees, hips, legs and stomach ached like the dickens.....but the shaking had stopped. 

Finally, after almost 7 hours, I fell asleep around 2am.
I've been to hospital with this before and they couldn't find what was wrong.  I would say it was a mild block, but doesn't explain the shakes.  Research has shown me that it might have been food poisoning and because of my low immune system, this is how my body reacts.  No one else got sick last night, just me......oh goodie.
I was shaking so much I felt like a fish out of water flopping around on the dock.

Now I'm afraid to eat anything but I know I HAVE to.......

Sunday, September 1, 2013

Crohn-fucius Say...

Crohn-fucius say...  just because I appear fine....doesn't mean everything's okay


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Wednesday, August 28, 2013

Thursday, August 22, 2013

New Antibody To Treat Crohn's And Colitis

I was made aware of this article regarding a new treatment for Crohn's and colitis....

http://www.ctvnews.ca/health/new-antibody-could-better-treat-crohn-s-and-colitis-study-1.1420887#ixzz2ceKi2Lx4

I'm always looking for the newest treatment(s) for this *bleep*-ing disease....  =)

I'm feeling they are getting close......



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Saturday, August 17, 2013

You Might Be A Crohnie...

If you hear the phrase "anal probing" and you DON'T think of alien abductions...
you might be a Crohnie


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Crohn-fucius Say...

Crohn-fucius say... you're going to put your finger where??!!



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Monday, August 12, 2013

Friday, August 9, 2013

Chocolate Un'beat'able Beet Cake

I went to a local farm market here last year and tried a piece of chocolate cake, curious because it was made with beets....yes, beets.  Pleasantly surprised, I couldn't tell that it contained beets, or the fact it was wheat-free and had no butter or oil.

My dad, who lives in the area of the market, now gets this for me every few weeks as a 'treat' for me, because I also found that I had no problems, as far as my Crohn's is concerned, eating it.  No pain, no getting that hurried feeling of having to go to the bathroom...nothing.  It's baked by a nice woman who just bakes small amounts, but I wanted to mention her as a 'thank you' for the wonderful cake as there is not too much someone with Crohn's can eat when it comes to sweets. 

She's at this market every week and the chocolate beet cake contains dark chocolate, sorghum, brown rice and tapioca flours, free range eggs, fresh beets, etc. and is topped with a chocolate ganache which is just chocolate and coconut milk. 

It's only about the size of half a loaf tin but I make it last by cutting about half and inch piece at a time.  It can't be bought in stores, so I make it last and is soooooooo worth it!!

The market is on til October and wondering what I'm going to do when the market season ends!!??

Monday, August 5, 2013

Crohn-fucius Say...

Crohn-fucius say...  Crohns is like a duck on a pond, calm and unruffled on the surface, but chaos under the surface.

Saturday, August 3, 2013

Crohn's Disease Blogs

Thanks to Healthline.com, my blog (among some other good ones) was selected one of the Best Crohn's Disease Blogs of 2013 !!

http://www.healthline.com/health-slideshow/best-crohns-blogs

' Crohn’s Leaving the Seat Down is an entertaining, sardonic look at life with Crohn’s that’s sure to get you through the toughest day. Author Vern was diagnosed in 1988 and dived into getting better with the same focus and drive that had made him a competitive figure skater.
Vern offers advice on diet, helpful organizations and reading, and why creating art can be a vital element of healing. His regular postings include the wise and witty “Crohn-fucious say…” and the rollicking “You Might Be a Crohnie.” '
 
I'm glad that, what started out as a place for me to "vent" about my illness, has not only helped me, but others as well.

Thanks again Healthline.com !!!!

Thursday, August 1, 2013

Remicade : Day 372

One year and 7 days.....8928 hours.....535,680 minutes.....32,140,800 seconds.....now matter how you want to look at it, it's the Anniversary of my infusion treatment.
Looking back over the year, I can honestly say, for the most part, the Remicade has worked for me.  The pain from Crohn's has 98% gone, as I still seem to get gas pain at around the 4-5 week mark after infusion and I still get the abscesses (which I can really do without thank you very much).  I am dealing with that right now.  The positive is that at least they keep draining, but DAMN they hurt sometimes.  Not much you can do if it hurts to stand, walk or sit.  And I am not one to "lay around", so, yes, it DOES get to me that I can't really do anything that I want, or need, to do.
All in all, Remicade is working.......for me.

Tuesday, July 30, 2013

Crohn's Disease Obituary

As I lay on the couch dealing with the three abscesses in a NOT so pleasant area, gas pains and fatigue and while waiting for tomorrow to come as it is my year anniversary for Remicade infusions.....I thought of the day that Crohn's, and bowel diseases in general, will be cured.
So, what would an obituary say about Crohn's........here's my version......


Crohn’s Disease, prominent bowel disease, died last night from complications of losing his soul mates Ileitis and Colitis. No one is really sure of his age, but according to written records, he was over 81 years old.

Asked about the loss of his dear friend, IBS, the soon to be obsolete and forgotten disease, described Crohn’s as complicated and was looked up to by other diseases of the body for his wide range of symptoms.

In the final days of his life, he revealed an unknown side of his psyche.  This hidden quasi-Freudian persona surfaced in the super-ego-like pursuit of his desire to be the number one disease.   

Sadly, the protracted search ended early Monday morning in complete and utter failure.  Yet even in certain defeat, the courageous Crohn’s secretly clung to the belief he was to live forever.

He is survived by IBS but has also come to the realization that soon another obituary will be written about him and will only survive in the pages of old medical journals.



Maybe...??  One day...??

Tuesday, July 23, 2013

Crohn-fucius Say...

Crohn-fucius say... may your day be filled with clean underwear.

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Thursday, July 18, 2013

How Are You Today?

I love it when you're not feeling well and people ask "how are you today?"  "fine", you say, so not to garner more questions.  Well, it's that and the fact that at that moment they ask you, you are right in the middle of an attack.  So I came up with what the pain means to me.....

Please rip out
All my
Intestines
Now!



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Monday, July 15, 2013

Saturday, July 13, 2013

Summertime Crohnie.....Fun??

It's that time of year again.  Summertime!!  Fun in the sun, beaches, bbq's, pools, camping.....everything you could ever want.

Unless you're a Crohnie....

If the heat doesn't get you, the summertime 'treats' will.  Isn't it amazing that no matter whomever you talk to that has Crohn's, summertime is the one time of year that activates your Crohn's and then it takes the fall and winter to recover, just in time to do it all over again.
Is it because of the heat alone?  or is it because of the sun you spend more time outside and do more?  The heat makes anyone dehydrated, but if you are already dehydrated from your illness, double it.
Along with the dehydration comes exhaustion and aches and pains.  Like today, for me, I'm done in and its only 5pm.  My muscles ache when I get up and when I sit down, when I walk, when I lay down...etc etc etc.  Trying to take in salt, but doesn't seem to help.  Add to that, trying to keep up with a 6 and 8 year old. whew!  Tired just talking about it...
Or... is it from the bbq hot dogs, cold pasta salad, salad, Coke, ice cream sandwiches, freezes?? You know.....all the foods that blow you up like a balloon to the point that it looks as though you're going to give birth to some alien baby.  You know you aren't suppose to eat all that, but it's summertime after all.
Then there's the beach.  Good luck trying to get some sun.  With all the wonderful meds we take, you can get...what?....5 minutes of sun??  Even though you drown yourself in SPF 500 before you go out in it, put one long pants, hoodie and sun glasses, you always come out with some kind of burn that makes you look like some mutant lobster.
Is it worth it...??

hmmmm......

thinkingggggggggggg.......

Can't answer that.  For me, it's a yes and no answer.  I don't think I'm going to sleep tonight even though I am so so tired and I have to go in to work in the morning for a couple of hours.  But it's worth it....a little...for some summertime fun. 

Consider it practice for Christmas dinner....


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Wednesday, July 3, 2013

Crohn-fucius Say...

Crohn-fucius say...if you awaken thinking you are Jesus, it's just the morphine talking.



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Tuesday, July 2, 2013

Canada Day Celebrations

Yesterday, July 1st, was Canada Day.  Canada's 146th birthday...happy birthday....and to all my fellow Canadians out there, I hope you all enjoyed some time celebrating the fact we live in a great country.
Where no one gets offended if you say homo milk, you get milk in bags as well as cartons and plastic jugs, you know that Mounties don't always look like that , you know basketball was invented by a Canadian, you don't care about the fuss with Cuba, it's just a cheap place to travel with very good cigars, only in Canada do we have drive-up ATM machines with Braille lettering and only in Canada do we say sorry for....well.......everything.
And best of all, there are actually different meanings to the word "eh"....here are a few...

Eh? = what did you say?
Eh? = what do you think?
EH? = something to say just to end a sentence.
Ehhhh!! = WOW!!
EH!? = what do you mean?
Eh?? = your joking!!!??
EH!! = Hello..(you off in the distance!!!)
Eh? want a doughnut or some Tim Bits?
Eh! = sure!!
Eh? = what you say when you realize you have no money to pay for it.
Eh..cmon, eh? = asking them to let you pay for it next time.
hey..eh! = want to go to the drive-in movie??
Eh...uhuh = yes sure!
Eh..y'know = I'll pick you up at 8:00 (8:30 in Newfoundland).
Eh..cmon!! = well that's early..but ok.
Eh..wanna? eh? = lets fool around ...
EHHH-ehh, EHHH-ehh = baby's first cry.
Ehh..whadya think eh? = marry me.

But as I walked around the Canada Day celebrations with my Canadian family, made up of English, Dutch heritage, wearing our red and white, sporting our rub on "Canadiana" tattoos, looking at the diversity among us with the thousands of others with their families, carrying their Tim Hortons coffee mugs (eventhough it was almost 30C ), eating their Timbits, and listening to some Celtic/Irish band singing about Cape Breton on the east coast, as a Crohnie all I could think about was......

........where are the porta potties!!!

Happy Canada Day everyone!!  Love this country!!

Sunday, June 30, 2013

Crohn-fucius Say...

Crohn-fucius say...eating 'ice cream' on a hot day, will make your 'ass scream'





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Wednesday, June 26, 2013

Wednesday, June 19, 2013

Probiotics


This is the Probiotics I use and have found, through trial and error, that these work "for me".
They may not work for you.  I have also found that I cannot take what they say on the packaging, which is one to three caplets a day.  I take one caplet every three days.  If I take more than that, it causes discomfort from bloating and gas, BUT, they work.  Doctors say, for 'normal' people, to take the probiotics that are 25 - 50 billion active cultures or CFU's....these are only 1 billion per capsule.
Again though, you need to find what works for you, these are what work for me.

Crohnie Quote Of The Day

 “If you do the little things well, you’ll do the big ones better.”






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Saturday, June 15, 2013

Wednesday, June 12, 2013

Remicade : Day 323

Closing in on my 1 year anniversary.
Had to have my infusion at a different site today as my usual site didn't have a doctor on site.  Though I had my regular nurse today.  But, not my usual infusion.  She wasn't able to get a vein.  Now, for those of us that have had numerous upon numerous IV's, hearing and seeing that the nurse isn't able to get a vein, is....well.....uncomfortable to say the least.  She tried twice in one hand.  It's not so much the needle going in, it's the 'digging around' (as I call it) that gets painful.  I ended up suggesting I put my other hand under the hot water tap to bring out the veins.  The heating blanket wasn't working, but the hot water certainly did and she had no problem getting it in on my other hand.
Two hours later and I'm outta there and resting at home.  Even as I write this, I can't stop yawning and trying to keep my eyes open.  Early night, gotta get up for work in the morning....

Monday, June 10, 2013

Hitting The Wall

"In endurance sports such as cycling and running, hitting the wall describes a condition caused by the depletion of glycogen stores in the liver and muscles, which manifests itself by sudden fatigue and loss of energy."

Now, I have never run a marathon or competed in the Tour de France, but it sure feels like it sometimes.....like today for instance.  You know that feeling...where your mind says keep going and your body says yeeeeah, right, I don't THINK so.
I work as a general maintenance technician....that's the fancy description for jack of all trades.....and I pretty much "do" anything I can to help the complex I work in (250+ townhouses), well...basically....function.  You name it, I've pretty much done it, or tried it.  I'm a garbage man, IT tech, painter, electrician, mason, brick layer, carpenter, landscaper, politician, etc., etc.  I have a great boss, that has an understanding of my disease and tries to accommodate me the best she can.  I've worked there for 10 years now, but recently I've been slowing down a bit and have changed my duties a little, to less of the heavy work to more lighter duties. 
I have less than 2 days til my Remicade infusion and I have been getting tired lately.   Everything was going pretty well today until about 230 - 3pm, when I basically "hit the wall".  I had to sit down, I was tired, out of breath, had to have something to drink....in essence - exhausted.
She sent me home a little early - I needed to lay down and rest - to recharge.
It was the weirdest feeling, and yes, I've felt it before, but I've noticed that as I get closer to infusion day, I get tired.  BUT even after infusion, the infusion itself is exhausting, and I'm still tired.
I've started on these new protein bars for Crohn's sufferers, the SimplyBar, but I've only had a few and I'm hoping the high protein will help, the more I eat.

So, when you get sooooo tired you have to take a break, do it.  Get a drink, eat something and rest.  It's your body saying, "HEY! I'm getting tired here, can we stop now, please?!"

Thursday, June 6, 2013

Wednesday, June 5, 2013

Wellness Coupon

Wellness Foods let me know, to let everyone else know, that you can get 20% off your first order is you use the coupon code - SimplyShop

Thanks Wellness Foods!!
Had the Peanut Butter and Chocolate SimplyBar today....yumm and NO tummy troubles!!

Monday, June 3, 2013

Wellness Foods

Have any of you Crohnies heard of "TheSimplyBar"?
It's amazing!  A protein bar invented by someone with Crohn's for people with Crohn's...AND tastes great!!!

In Canada, go to www.wellnessfoods.ca to learn more and here http://www.wellnessfoods.ca/additional-canada-stores.html to find out where you can buy them.

All I can say is, yum!!  and thanks! to them

Sunday, June 2, 2013

Tuesday, May 28, 2013

Crohn-fucius Say......

I'm channeling my inner wisdom and introducing you to Crohn-fucius

Crohn-fucius say, pain in ass is literal, not figurative
Crohn-fucius say, may your toilet roll always be full



Saturday, May 18, 2013

New Drug, A Crohn's and Colitis Breakthrough...????

Looking over the Internet, I came across an article about a new drug that's in Phase III of research and could be available within the next couple of years.  The drug is called Vedolizumab and I found out about it through a newspaper article in The London Free Press in London, Ontario, Canada.

As a Crohnie, I get "excited" about news of a new drug, or drugs, to help treat this awful disease.  BUT at the same time, I am very wary and don't get my hopes up until I see results.

Fingers crossed...

Friday, May 17, 2013

Funny Thing Happened At The GI Office.......

I had my 6 month check up with my Gastro this week and basically....I still have Crohn's.

During my 15 minute chat, I discovered that I was actually contributing to my dehydration.  Yea, go figure.  Here all this time, I've been drinking tons of water, but I was forgetting one important thing.....I also need salt.  Yep, salt.  And when you think about it, it's true.  When you go in to hospital and they re-hydrate you, they give you basically salt water.  And all these years I've been avoiding salt.  Well you learn something everyday and after over 20 years of Crohn's, apparently I'm still learning.  So, now I snack on saltine's (with peanut butter) and a shake (or two) of salt on my dinner.  I still have to drink though as well.   I'll let you know if it works.

She can see from the tests that the Remicade seems to be working for the most part.  It has eliminated the pain but I still haven't gained weight.  Then she proceeded to tell me that I may have "topped out" at my current weight.  I may never get bigger than I am.  She recommended Carnation Instant Breakfast, but also made suggestions on different ways of using it, like in yogurt, soups etc.  Even watering down Boost and drinking it throughout the day instead of all at once.  I find that if I drink one of those little bottles, I'm heading to the bathroom and "urinate out my ass"!  So it looks as though I'm going to be stuck at 145 - 150lbs.

Other than that, I'm going to get my colon scan in Sept to get a closer look to see if the Remicade is working......let's hope.  Last time, which was almost 2 years ago, she couldn't even get the tube inside a few inches from all the inflammation and scarring. 

Let's hope there's light at the end of the tunnel.

Thursday, May 9, 2013

Crohnie Quote Of The Day

The best thing about the warm weather?  The warm toilet seat in the morning.




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Saturday, May 4, 2013

Crohnie Quote Of The Day

Sometimes good things fall apart, so better things can fall together.




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Wednesday, May 1, 2013

Remicade : Day 281

Closing in on a year of Remicade and I do feel better, but I still have 'minor' problems like abscesses and I ache all over.  Especially in the muscles and joints, to the point where it makes it difficult to walk sometimes.  I see my GI in a couple of weeks so maybe she has an idea what's going on or maybe my infusions get switched to every 4 or 5 weeks.  The problems always seem to get worse as the infusion nears....

well now I'm all filled up with the 'liquid gold' and now let's feel good for another 6 weeks, til the next fill up.

Saturday, April 27, 2013

Crohnie Quote Of The Day

It was asked on Twitter the other day.....

"How do you feel about your IBD? is it a gift or a nightmare to you? please share your thoughts."

So, from that, I have today's quote of the day from my personal experience...



"If it weren't for my Crohn's, I wouldn't have my lovely wife and our two kids"






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Monday, April 22, 2013

Urinating Out My Ass

We Crohnies are a talented bunch.  We can eat and eat and eat, and not gain weight, we can lay in the fetal position all day long, we know where every bathroom is in the world, we can inflate our abdomens like a balloon simply by doing nothing and we can urinate out our asses! (or so it feels like anyway)

The latter I experienced this weekend during my 6 year olds birthday party.  About half way through, I started having to go to the bathroom and by the time the party was done, I had been 3 times and went 3 times more before bed.  Six times in the night and twice more in the morning before starting to slow down to a Crohnie 'normal', or at least 'normal' for me.  It's now lunch time and I'm starting to NOT having to go to the bathroom.  And yes, before figuring out what had happened, I was literally 'urinating out my ass'.  It was just like water.
Unfortunately, doing this causes dehydration, which I am experiencing today.  Weakness, dry mouth, exhaustion and thirsty.  I have been sucking on Jolly Ranchers to help.
The culprit...??  I thought at first it was the icing from his birthday cake ( my wife made a great snake cake with green icing and Oreo cookie crumbs as 'dirt'), as I hadn't eaten anything else prior, but I've had icing before and not had a problem.  The key here is the fact it was 'green' icing.  Yep.....food coloring (or the combination of icing and food coloring)  I had forgotten about that.  It's happened to me in the past, but as I'm doing better on the Remicade, I didn't think anything of it to eat the cake.
Well, after almost 24 hours, 14 bathroom visits, a couple of Tylenol 3's and enough water to fill a small lake, I'm starting to feel better.

The moral of the story?  Don't eat icing with food coloring unless you want to urinate out your ass!!


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Saturday, April 20, 2013

Crohn's and Dehydration

I've posted about dehydration here before, but I think I might go in to more detail after being asked a few times via email....thank you for all the questions!

Let's start by saying, I have been to hospital a few times for dehydration and have been admitted for days at a time.  It's not like I stopped drinking, just not enough.  Turns out, I had moderate to severe dehydration.  I my case, I was very tired, exhausted, thirsty, very dry mouth, low blood pressure, rapid pulse and zero energy.  Now, having Crohn's, I thought it was my Crohn's.......yeah, no.

I was in hospital the last time for dehydration for a week getting IV fluids.  An easy sign to see if you are getting enough water is your urine.  The more yellow it is, the more water you need.  If it's running clear, you doing good!  Oh yeah....if you're NOT peeing at all, NOT a good sign.

I've also learned that drinking 8 glasses of water a day, isn't necessarily true.  It's when you drink.
Think of your body as an engine.  When you get up in the morning, drink a glass of water, NOT coffee, etc.  You have to get your body 'started' for the day and a glass of water is the best thing to do, as well as the last thing before you go to bed.

So, here is a list of symptoms...thanks to the Mayo Clinic

Mild to moderate dehydration is likely to cause:
  • Dry, sticky mouth
  • Sleepiness or tiredness — children are likely to be less active than usual
  • Thirst
  • Decreased urine output — no wet diapers for three hours for infants and eight hours or more without urination for older children and teens
  • Few or no tears when crying
  • Dry skin
  • Headache
  • Constipation
  • Dizziness or light-headedness
Severe dehydration, a medical emergency, can cause:
  • Extreme thirst
  • Extreme fussiness or sleepiness in infants and children; irritability and confusion in adults
  • Very dry mouth, skin and mucous membranes
  • Lack of sweating
  • Little or no urination — any urine that is produced will be dark yellow or amber
  • Sunken eyes
  • Shriveled and dry skin that lacks elasticity and doesn't "bounce back" when pinched into a fold
  • In infants, sunken fontanels — the soft spots on the top of a baby's head
  • Low blood pressure
  • Rapid heartbeat
  • Rapid breathing
  • No tears when crying
  • Fever
  • In the most serious cases, delirium or unconsciousness
I'm hoping this helps a little!!!


Wednesday, April 17, 2013

Crohnie Quote Of The Day

"Learn to appreciate the things you have before time forces you to appreciate the things you once had"




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Saturday, April 13, 2013

Bloating

The other day, I was making a pasta dinner for my family and thought to myself, "Self....why not make some extra pasta and make a cold pasta salad?"  What a great idea..... or so I thought.
Turns out, even after more than 20 years of having Crohn's, a cold pasta salad is a big no no.   Why?  After confirming with a nutritionist, apparently after pasta has been cooked, it starts to ferment.  I did not know this.
Now, for a "regular" person, bloating is painful and uncomfortable, but for a Crohnie, it's just painful.  No more cold pasta or leftover pasta for me, that's for sure.
So I did some research and here are the top 10 foods and food groups to avoid as they can cause bloating.

Top 10 Bloating Foods

1) Greasy, fried foods
Greasy fast foods like burgers, chips, fried chicken and deep-fried eats like samoosas, koeksisters and doughnuts can cause bloating because it takes the stomach much longer to break down the fats and properly digest them. This extra time allows gas to build up, causing bloating.
2) Salty foods
Salt is a big culprit when it comes to bloating. High-sodium foods cause the body to retain water, which leads to a bloated feeling.  Sodium can show up in some unlikely sources, especially in processed foods, so read your food labels and rather flavour your foods with herbs.
3) Spicy foods
Spicy foods have been shown to stimulate the release of stomach acid, which can cause irritation. Limit the use of black pepper, nutmeg, cloves, chilli powder, curry, onions, garlic, mustard, BBQ sauce, horseradish, tomato sauce and vinegar.
4) Gassy vegetables
Some vegetables produce more gas than others do, and everyone varies in their ability to absorb and tolerate that gas. If you're sensitive, you may want to limit the amount of gas-producing vegetables such as the following:  baked beans, broccoli, Brussels sprouts, cabbage, cauliflower, lentils, Lima beans, onions and peppers.
5) Carbonated and high-acid drinks
All carbonated drinks - from sodas to fizzy mineral water - can cause bloating because the carbon dioxide trapped in the bubbles creates gas in the stomach. Some beverages such as alcohol, caffeinated drinks, coffee, tea, hot chocolate and some fruit juices (like orange juice, pineapple juice and tomato juice) are high in acid which can irritate your GI tract, resulting in swelling and bloating.
6) Artificial sweeteners
Certain artificial sweeteners, such as aspartame, saccharin, sorbitol, xylitol, maltitol, mannitol, cyclamates and sucralose can increase bloating. These are often found in diet drinks, sweets, cookies, energy bars and chewing gums. The artificial sweeteners linger in the stomach because they cannot be digested, and after enough build-up they act as a platform for the fermentation of bacteria, leading to production of gas.
7) Dairy products
If your body is unable to digest lactose, or milk sugar, the consumption of dairy products can make you feel bloated. This condition, called lactose-intolerance, is relatively common, especially among people of Asian, African and Southern European descent. The lactose that is not completely digested will pass to the colon where gas is produced by the bacteria trying to break it down. If you suspect that you are lactose intolerant, consult a dietician to ensure adequate consumption of other calcium-rich foods.
8) Too much fruit
Just as some people are lactose-intolerant, others are fructose-intolerant, and their bodies cannot digest the sugar properly. If you find you have excess gas and bloating after eating fruit, this may apply to you. Choose lower-fructose fruits, like sweet melon and apricots, instead of high-fructose fruits like apples and bananas. It is also best to eat fruit separately from a meal - either 30 minutes before or at least two hours after.
9) Starches
Most starches, including potatoes, maize, pasta, and wheat produce gas as they are broken down in the large intestine. If you find that you are particularly sensitive to a starch, substitute it with rice - the only starch that does not cause gas. Also, beware of refined grains like white flour that's often used in white bread, cake and biscuits. Not only do they offer little nutrition, they can also cause water retention, with bloating as a result.
10) Chewing gum
Chewing gum can make you swallow air, which then gets trapped in your belly, causing pressure, bloating, and gas. It also often contains artificial sweeteners which will just aggravate the bloating.

On a side note, as a Crohnie, I would advise to stay clear of all artificial sweeteners.  They cause way too many problems on top of the bloating.  It's been my experience, that Aspartame was causing me cartilage problems in my chest....I know, go figure.
Doesn't leave much left to eat....so enjoy what you can!!

Monday, April 8, 2013

Crohnie Quote Of The Day

I saw this and thought for a minute......yes, it's exactly true. 


"Health is not valued until sickness comes." ~Thomas Fuller





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Wednesday, April 3, 2013

Crohnie Humor

"Having a perianal abscess is like having a nosey neighbor…
...you know its there, but don’t want to look, and there's no real good way of getting rid of it."







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What Every Crohnie Needs......In The Bathroom


Monday, April 1, 2013

Remission For Crohn's Disease

Since starting Remicade (Inflixilab) almost a year ago, I've had many people ask me if I'm in remission.  The answer I give?  "Don't know"

The definition of 'remission' is :

A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission.

So, to me, the key here is the word 'temporary' and the definition of that.  Some days, I would definitely say "yes, I would say I'm in remission"  but other days....no.
If you define remission as, do I have anymore 'Crohn's pain' (abdominal, cramps, etc), then I would say 'yes, I'm in remission' as I haven't had any of that pain for awhile (knock on wood), but I still have joint and muscle pain (actually worse since infusion started) and I still get the pesky abscesses.  My infusions, though, have been changed to every 6 weeks in hope that it will help.

So, as you can see, it's a hard question to answer, except to say...  "don't know"

Saturday, March 30, 2013

Crohnie Quote Of The Day

I heard this one on the radio today and my kids were singing along....I can totally relate and should be the Crohnie Theme Song

So, for all you Crohnie's out there that have had surgery and have had things removed, moved, added, etc., and could sing a song to your intestines.... this Crohnie quote is for you.....from Taylor Swift

"We're never, ever, ever getting back together..."







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THE Best Pork Chops....EVER !!

As a Crohnie, I find it harsh on my Crohn's to eat meat.  Unless it's VERY tender or I wash it down with wine, to help with digestion.
But my wife found an awesome recipe that covers both....they're called Western Pork Chops, or 'Crohnie Chops'
It tastes soooooo good, they're tender and I add rice to it for an awesome dinner.

4 pork chops
341 ml (1 bottle) Beer
3 tbsp brown sugar
3/4 cup ketchup

Brown the pork chops and add pepper/salt (or your fave seasoning) and add to baking dish.
Mix the beer, brown sugar and ketchup together and pour over pork chops.
Bake for 1 1/2 hours, covered, at 375F, remove cover for the last 15 minutes.
Serve with rice.
The sauce can be poured over the rice

Believe me....after it starts cooking, the smell alone will make your mouth water!

Enjoy!!!!

Wednesday, March 27, 2013

Cinnamon and Honey Drink

I've been searching for a good recipe for a cinnamon and honey drink and after some trial and error, I think I've found one that tastes not too too bad.

It's always been touted that honey and cinnamon having natural 'healing' so it can't hurt to try.  I already substitute honey for sugar in my tea and coffee.  It takes a little to get use to, but worth it in the end.

My recipe....

4 teaspoons honey
1/2 teaspoon cinnamon powder
3 cups water

Boil ingredients together in a small saucepan and drink 1 cup, 3 times a day, boiling it each time so its hot.

All this is to my taste, yours might be different, so feel free to tweak it any which way.  I find the cinnamon strong.
Anything to keep table sugar out of the body.

Enjoy!

Sunday, March 24, 2013

Crohnie Quote Of The Day


"If life gives you lemons, throw them back at life...see if life will make the same mistake again"







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Wednesday, March 20, 2013

Remicade : Day 239

Because of those nasty, pesky, annoying and painful abscesses, my Remicade was switched to every 6 weeks from the 8 weeks I was originally on.

I wore my new T shirt, which is now my "infusion shirt", which states.. "F*#K Crohn's...it's the shits"

Not enjoying the painful muscles and joints, but hey!  at least the Crohn's is at bey for now.......

Thursday, March 14, 2013

Crohn's and Food

I get asked alot about what can I eat?
It's a great question I wish I had an answer for.  The easy answer is.....I can eat anything I want.

But.........

Then you have to ask yourself, "how much do I want to pay for it afterwards?"
After over 20 years of trial and error I can sum up what I need to avoid.  Some of these items cause me discomfort, while others can end me up in the hospital.

My top 10....

10.  Lettuce
9.    Milk (but I have no problem with yogurt so I can't put 'dairy')
8.    Fried foods
7.    Alcohol 
6.    Any fruit that has a skin (I peel almost everything)
5.    Raw vegetables
4.    Chocolate (I know, sad really)
3.    Coffee, Tea, Juices (but brewed coffee seems OK...weird)
2.    Popcorn
1.    Nuts and Seeds

1, 2 and 5 have ended me up in hospital with bowel obstructions.  Raw carrots are a definite no no!

What it boils down to....there is no cure, no cause....you live with it and deal with the situations, no matter how bad it can get, the best you can.

There is no easy answer to the question about what a Crohn's patient can eat, it's highly individual

In the beginning, I kept a journal and kept track of what I ate and the reactions I had.  BUT, even that is deceiving because it depends on whether or not you're having a flare at the time.  Sometimes you can eat something one day, and then can't handle it the next.

Trial and error my friends......trial and error.

Wednesday, March 6, 2013

Saturday, March 2, 2013

Crohn's History Spreadsheet

I've mentioned over the years that I have a spreadsheet I take with me to hospital when I go and recently I've had a few people ask me what I have on it.....so I'm going to tell you.

Basically, I've taken what the doctors and nurses ask me while in Emergency (several times) and some of the questions, I just can't remember the answers.  Either from just not remembering or I'm in too much pain and/or discomfort to answer.

So, at the top I have the title of "Crohn's History" and below that I have the date of my diagnosis.
Then, below that (from left to right) I have each and every visit to hospital, starting with the date, why I was in, if I was admitted, and the hospital.

Here's an example......(it's much neater than this, just didnt convert nicely to the blog)

Crohn's History
 
June 1, 1988   Diagnosis Hospital
June 2-9, 1989   Right Hemicolectomy (bowel resection)     admission Surrey
June 22-30, 1989   Intra-Abdominal abscess  (laparotomy, incision, drainage)   admission Surrey
August 29, 1990      Perianal abscess   (incision, drainage) emerg. Surrey
Sept 26-29, 1991   Fever & anemia admission Surrey
Sept 19-22,1992   Abdominal abscess  (laparotomy, incision, drainage) admission Surrey
Nov 12-22, 1992   Resection of neo-terminal Ileum, transverse & descending colon admission Surrey
Oct 11-12, 1993   Renal colic emerg. Surrey
December 6, 1993   Perianal abscess   (incision, drainage, insertion of seton) admission Surrey
Jan 16-19,1994   Renal colic  (cystoscopy, pyelogram & manipulation) admission Surrey
April 13, 1995   Renal colic emerg. Surrey

Then below that, I have two small charts listing my doctors and meds.

Dr. #1   General phone number
Dr. #2   Gastroenterologist phone number
Dr. #3   Surgeon phone number
Immuran   150mg / day since Nov. 2011
Remicade   400mg infusion since July 2012
Zopiclone   7.5 mg  half a pill as needed at bedtime
Tylenol #3   as needed
Now, obviously, you have to remember to update it as your meds change or if you go to hospital.  I always update, print and put it by my front door and a copy in my hospital bag.  It came in handy once when I was home alone and had to call an ambulance (bowel obstruction) as they always want to know what meds your on and as I was in so much pain (not to mention throwing up every couple of minutes), I had the spreadsheet ready by the front door.
The above chart is just an example.  I've entered some of my information, but my sheet is too long to show here, but those first few years are my actual incidents and those are my meds currently.

I have found over the years that this sheet comes in handy.  You might never use it and even I don't use it all the time, but its there if you do

You can never have too much information...

PS....I got the more detailed information directly from my medical records I get after every prolonged stay in hospital

Thursday, February 28, 2013

What Is Crohn's Disease?

Currently, no one know what causes a person to have Crohn's, but.......

Crohn’s disease may affect as many as 700,000 Americans. Men and Women are equally likely to be affected, and while the disease can occur at any age, Crohn's is more prevalent among adolescents and young adults between the ages of 15 and 35.
The causes of Crohn’s Disease are not well understood. Diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.
The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response. Cells travel out of the blood to the intestines and produce inflammation (a normal immune system response). However, the inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causing patient symptoms.
Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s. Studies have shown that 5% to 20% of affected individuals have a first – degree relative (parents, child, or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have IBD. The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.
The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.

-CCFA

Monday, February 25, 2013

Great YouTube Video

Ten things not to say to someone with a chronic illness.....gotta see it

http://youtu.be/djCYvgSDbU0

Nicely done!

Sunday, February 17, 2013

Crohn's Symptoms

Since CD can be located anywhere in the GI tract, symptoms can vary. On the whole however, they often include abdominal pain, cramping, diarrhea, nausea, vomiting and not surprisingly, weight loss and lack of energy.

Crohn’s disease is a chronic (lifelong) illness. People who have CD will experience periods of acute flare-ups, when their symptoms are active and other times when their symptoms go into remission. The average risk of a flare-up in any one year is approximately 30%.
In 25% of those with CD, perianal disease may also develop. “Peri” means “around” – therefore perianal disease is located “around the anus”.

Specifically this means that a person could develop:
  • painful, swollen skin tags (that appear to be haemhorrhoids but are not)
  • abscesses (bags of pus created inside the body as a result of infection)
  • fistulas (infections that have tunneled from the abscess to a hollow organ such as the rectum or vagina)

-CCFC