Wednesday, December 30, 2015

You Might Be A Crohnie

If  you are more embarrassed buying toilet paper then you are buying condoms or tampons
...you might be a Crohnie

Tuesday, December 22, 2015

Twas The Night Before A Crohnie Christmas

Here, once again, is my version of the famous poem. 
There are some words that might offend, but.....well.....I never said I was politically correct =)

 Enjoy !!!

‘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 our plight,
“I have Crohn’s Disease too, it’s going to be one HELL of a night!!”
 
Merry Christmas everyone!!
 
 

Tuesday, December 15, 2015

12 Days A Crohnie Christmas

Here we are, the last day, so now time to sing it......


On the twelfth day of Christmas my Crohns 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 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy


Merry Christmas everyone!

.

Monday, December 14, 2015

12 Days A Crohnie Christmas

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

10 Remicade infusions,
9 colonoscopies,
8 attentive and caring nurses,
7 types of medications,
6 different doctors and surgeons,
5 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy

Sunday, December 13, 2015

12 Days A Crohnie Christmas

On the tenth day of Christmas my Crohns Disease gave to me...
...10 Remicade infusions
9 colonoscopies,
8 attentive and caring nurses,
7 types of medications,
6 different doctors and surgeons,
5 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy

Saturday, December 12, 2015

12 Days A Crohnie Christmas

On the ninth day of Christmas my Crohns Disease gave to me...
...9 colonoscopies

8 attentive and caring nurses,
7 types of medications,
6 different doctors and surgeons,
5 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy

Friday, December 11, 2015

12 Days A Crohnie Christmas

On the eighth day of Christmas my Crohns Disease gave to me...
...8 attentive and caring nurses
7 types of medications,
6 different doctors and surgeons,
5 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy
.

Thursday, December 10, 2015

12 Days A Crohnie Christmas

On the seventh day of Christmas my Crohns Disease gave to me...
...7 types of medications


6 different doctors and surgeons,
5 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy
.

Wednesday, December 9, 2015

12 Days A Crohnie Christmas

On the sixth day of Christmas my Crohns Disease gave to me...
...6 different doctors and surgeons

5 kidney stones,
4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy
.

Tuesday, December 8, 2015

12 Days A Crohnie Christmas

On the fifth day of Christmas my Crohns Disease gave to me...
...5 kidney stones,

4 visits to the ER,
3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy
.

Monday, December 7, 2015

12 Days A Crohnie Christmas

On the fourth day of Christmas my Crohns Disease gave to me...
... 4 visits to the ER,

3 sleepless nights,
2 fistulating peri anal abscesses
and a flexible sigmoidoscopy
.

Sunday, December 6, 2015

12 Days A Crohnie Christmas

On the third day of Christmas my Crohns Disease gave to me...
... 3 sleepless nights,

2 fistulating peri anal abscesses
and a flexible sigmoidoscopy
.

Saturday, December 5, 2015

12 Days A Crohnie Christmas

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

and a flexible sigmoidoscopy
.

Friday, December 4, 2015

12 Days A Crohnie Christmas

That time of year again...

On the first day of Christmas my Crohns Disease gave to me....
... a flexible sigmoidoscopy !!!

Thursday, December 3, 2015

You Might Be A Crohnie

If you do your best thinking while sitting on the toilet...because that's where you always are...
you might be a Crohnie

Friday, November 20, 2015

A Difference A Month Makes

What an up and down month it's been.
I haven't had the energy or desire to write for awhile and the main reason....very difficult to sit.
It started out with a peri anal abscess but it started to drain on its own, so no need for hospital visit (which I'm always thankful for).  That lasted about 3 weeks before the dreaded discovery that it was now a fistula and leaking out the hole....god that hurts.  I was so afraid to go to the bathroom that I did what most of us do and stopped eating.  I know its not a great idea, but the alternative was pain and I have dropped 10 lbs.  It was at this point that I took the trip to the ER and ended up having surgery but the surgeon couldn't find the fissure so did his best to relieve the pain.  Three days later I was home still with a hole in my body, but no cavity for the fissure to fill so at least I can go to the bathroom with minimal pain.  Needless to say I haven't been able to work either....no work, no money.
Now I have an appointment with a colorectal surgeon and an MRI.  Always before Christmas. Monday is D-Day and see what the surgeon has to suggest. 
Ironically, the Remicade IS working for the rest of the Crohn's, just not the abscesses.

Wednesday, November 18, 2015

You Might Be A Crohnie

If you use your wedding ring as a barometer to gauge how much weight you gain or lose
... you might be a Crohnie

Tuesday, October 20, 2015

My Crohn's Inspired Tattoo

After all the tattoos I have, I finally got my Crohn's inspired tattoo, done like it was put on with a paintbrush to accent my artistic side.
All my tattoos have some sort of meaning and this one is no different.  Not only is it to bring awareness of Crohn's Disease but support for it as well.



Friday, October 16, 2015

You Might Be A Crohnie

If one of the decisions you make for the day, is whether or not to just get out of bed
...you might be a Crohnie

Wednesday, October 14, 2015

Crohnie Quote of the Day

Pain can change you, but that doesn't mean it has to be a bad change.
Take that pain and turn it into wisdom.

Wednesday, September 30, 2015

Remicade : Day 1163

Came in to the clinic a couple of hours ago and my nurse asks me, "did you know I need to take blood from you today?" That's not always good to hear.  Apparently my gastro wants to check my Remicade levels.....also not something I wanted to hear. After my colonoscopy there was a note stating she found "stricture and inflammation".
Maybe she can see something from the bloodwork and hopefully my Remicade can be adjusted.  I'm not feeling "bad" or anything, so not sure what she saw. The treatments have been very helpful towards having a somewhat normal life, I don't want to stop now. I've almost forgotten what life was like prior to Remicade....almost.

Wednesday, September 16, 2015

Crohn's and the Common Cold

It was so easy when I was "normal" whenever I got a cold and cough, I could just take some cough syrup, or decongestant.  That was so long ago.  I use to take some Nyquil at night, fall asleep and wake up the next morning and feel better.  Not completely well, but better.
Since Crohn's, I haven't been able to do anything like that.  Nyquil is now completely out of the question.  If I take it, it goes right through me and makes for one hell of a "messy" night, not to mention the frequent hourly runs to the toilet.  Sometimes even causing abdominal discomfort.  So, what does one do when you catch a cold and have Crohn's..??  For me, just about nothing. 
But...
I did discover that the majority of cold medicines, and there are hundreds, contain the same medicine as a regular, or extra strength Tylenol.  The active ingredient is the same, so why spend the extra money on something you already have in the medicine cabinet. This is what I take now and it seems to work nicely.  Another thing I discovered since my Remicade treatments, Nyquil doesn't affect me like it use to.  I can now take it and not have discomfort, only have to go to the bathroom a few times in the night and have only minimal accidents.
Medicine, like food and drink, for Crohn's is trial and error.

Friday, September 11, 2015

Crohnie Quote of the Day

"How can I hide in the dark, curled up in the fetal position....when it's so damn light outside"

Thursday, August 27, 2015

All 'Pee' and Clear

Sorry that I haven't updated, but have been dealing with my kidneys.  Unfortunately, kidney stones are secondary to Crohn's Disease and I have been suffering through them on and off for 25 years now.  Now I have been researching a low oxalate diet.  Most of the foods and drinks that are high in oxalates I don't take anyway, but now I'm learning that if I were to have something that is higher, then I need to eat, or drink, something with calcium.  Calcium is the key to lowering the oxalate.  BUT, I normally don't drink milk, etc. because of lactose intolerance, so it's been interesting researching what foods have calcium. 
I have the stent removed now (that was "fun") and no longer have the flank pain from my kidney.  The doctor told me it was one of the longest surgeries she's ever done with stones, just over an hour. I had 4 and one almost 1.5 cm.  I had to keep the stent in for a week and a half, but she was able to get them all by either using the basket or breaking them up by laser.  I like to say, "all 'pee' and clear".
I have been taking my time off writing more of my book.  I got the title copywrited and didn't realize when I started writing, that it would be such a long process trying to remember everything over the 27 years of my disease.
It's coming along though...

Wednesday, August 19, 2015

Crohnie Quote Of The Day

I won't let Crohn's define me, but there are days I just want to curl up and give in.....just a little.

Saturday, August 15, 2015

Kidney Stones and You

I went in to Emergency at 3am Thursday with right flank pain (kidney) that came on very suddenly at 1am.  I wasn't going to suffer hoping it was going to go away this time and woke up my lovely wife to drop me off at the hospital.  The pain was intense and I felt nauseous and every little bump in the rode in the 20 minute ride to the hospital was an adventure.  I got through triage and in to a bed right away, which usually doesn't happen, as there was only one person waiting.  Within half an hour of arriving, I had the IV in and the morphine was slowly being pumped through my veins.  I need Gravol with it as morphine makes me sick.  Soon, the pain was gone, or masked, but I didn't care as long as I didn't have to feel it. 
I was still able to go to the bathroom which was good, but the Dr wanted a CT scan.  I had it later in the day and had to wait in Emerg for my results.  When I finally got to talk with the Dr, it wasn't what I wanted to hear but it was what I feared.  I had numerous stones and needed surgery.  He made me an apt with a urologist right away and walked across the parking lot to another building to talk with her.....again, not what I wanted to hear.  She told me, and showed me, I had 2  5mm stones in the kidney, one 4mm stone at the end of the tube near the bladder and one 1.3cm stone at the entrance to the kidney....no wonder it hurt!  They wanted to go in with a laser and get them out because she said there would be no way I would pass these on my own.  It was scheduled that night and I went home to wait the few hours until I had to return.  BUT, just after getting home, the hospital called cancelling until the next day.
Well, things sure have changed in the procedures in surgery prep since my last surgery 15 years ago.  I was given a bag of warm "wet wipes" and was told before I put my gown on, wipe my body down with these wipes which you don't rinse off.  Weird feeling after you put the gown on.  Lots of questions from the nurses, that's the same, but now they lay a full length plastic bag under the blanket and then hook up said bag to a large blue vacuum-looking machine which blows warm air into the bag.  The nurse explaining that keeping the patient warm lowers the chance of infections.  I'm all for that!  Got my IV in and now had to wait for my time which felt like forever, but it did come and was wheeled down to the OR waiting area where I had to answer all the questions again and got to wear the fancy blue paper shower cap.  Talked to the nurse, the anesthetist and the surgeon and was wheeled in to the operating room.  Shuffled from the reasonably comfy stretcher bed to the rock hard operating table.  I always love how the anesthetist stands behind you so you can't see when they are going to knock you out.  Put the oxygen mask on, but I never knew oxygen smelled that funny, and they say to me 'okay, you're going to feel a little tired" as I feel the cold enter my IV site.  It's at this point whenever I have surgery I raise my right hand and spread my fingers.  As soon as I start to feel it, I start counting down from 5.  I usually get to 1 finger and the next thing I knew, I was in recovery.  All done.  I don't know what's worse, having the surgery or trying to come out of the drugs.  I apologized to the nurse in the room ahead of time for anything bad I might say, because I have no idea what I'm saying. 
 I needed to go the bathroom and DAMN that hurt.  Not so much peeing itself, but my kidney, WOW!  Quite a bit of blood, but that was to be expected from shoving god knows how many tools up that tiny tube to get to my kidney.  My wife came to take my home, but I don't remember the drive home, at all.....not at all.  At least I can eat now.  I hadn't eaten since Thursday morning.
I have to go back in 10 days to pull out the stint that was left in and find out all the details about how the surgery went from the surgeon. 
Let's hope it's another 15 years before I have to go through this again....

Saturday, August 8, 2015

Crohnie Quote of the Day

This one involves love and relationships when it comes to us living with any illness...


If a person wants to be a part of your life, they will make an obvious effort to do so.  Think twice before reserving a space in your heart for people who do not make an effort to stay.

Monday, August 3, 2015

Anti-TNF's

Not having any success with anti-TNF's?  Wish there was something else?  There's a new study about new drugs for those of us on anti-TNF's that aren't working like they should, or we would hope.  I personally have had great success with Remicade, so I cannot participate....
Check them out here:


http://www.celeststudy.com/verncrohns


If you can help, great and I thank you in advance.

Thursday, July 30, 2015

You Might Be A Crohnie

If you lose count how many times you go to the bathroom in the middle of the night
...you might be a Crohnie

Saturday, July 18, 2015

You Might Be A Crohnie

If you start naming your kidney stones like they do with hurricanes...
you might be a Crohnie

Saturday, July 11, 2015

Crohn's Disease-Inspired Tattoos

Healthline.com has spent the past few months gathering tattoos inspired from Crohn's disease and now have posted them to their website.
Check them out here......


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


Nice job Healthline !!  and Thanks!!


- Vern

Wednesday, July 8, 2015

Remicade: Day 1078

It's been a rough couple of weeks between me and my Crohn's so it was a welcome relief when infusion day comes along.
Last night I awoke to pain on my right flank and anyone that's had it knows, it was a kidney stone.  I had my wife take me to ER and for the second time in as many weeks, there was no one waiting and I got in right away.  They hooked me up with an IV and was putting in pain meds before the nurse came by to take my blood.  And right after that, they started pumping in water.  I went through 2 bags in an hour and was out of the ER in about 3 hours.  The pain was lingering but it was more of an ache than a pain, so that made me happy!  A little while later and it was all gone.  Not sure if I passed it or not, but for now...no pain makes me a happy boy.

Sunday, July 5, 2015

You Might Be A Crohnie

If you can drink all day long and still be dehydrated...
...you might be a Crohnie

Sunday, June 28, 2015

Awakened Sleep

It's been a while since my last post but as all us Crohnies know, flares happen.
After a week of suffering and "putting it off" because, you know, it'll just go away....I checked myself in to the ER with yet another perianal abscess.....fun.
To my shock and surprise, the ER was empty!  No really!  It was 8 in the morning and not a patient in site.  After all the back and forth with the triage nurse and check in nurse, she said to have a seat and they'll call my name.  I always find this humorous because I just told them I can't sit.  I tried to make myself comfortable while I wait, but I ended up standing while I waited.
It didn't take too long to give me the call and then the slow walk through the maze of corridors to the awaiting bed.  Now normally I wouldn't say these ER beds are comfy, but in my condition, it was like laying on a bed of soft kittens.  The relief of just laying down taking the pressure off the abscess was all it took.
The nurse was there right way ready to put in an IV line and hooked me up with some sugar water to keep me hydrated and to give me pain meds.  The morphine and gravol couldn't come soon enough and boy it works fast, but the pain still was more than I like.  The pressure alone from the abscess produces so much pain, it would drop even the strongest man.
The doctor finally came and told me what I already knew, let's cut the damn thing open!
About three hours after coming in to the ER, I was surrounded by 2 doctors and 4 nurses ready to do the procedure in an "awakened sleep".  One doctor to administer the drugs, one to do the cutting, one nurse acting as the RT (to watch my breathing), one to take notes as the doctor talks and two student nurses...to just watch and learn.  As much as I love being "put out", the awakened sleep is freaky as it happens!  They use propofol (and another drug I can't remember).  When it starts I feel very disoriented as it starts to take effect, BUT, what's going on in my head is hard to describe.  It's like when a train approaches and gets louder and louder.  It's so "noisy" in my head I want to scream because I can still hear everyone talking but it's like all 6 of them are screaming in my ears right before I'm out. 
And just like that, I start to awaken.  It's done.  The pressure pain is done, but now I have to deal with packing and incision pain....but the worst of all that is trying to "come to". 
I can hear the nurse calling my name and telling me to take deep breathes, but the disorientation is disconcerting. I don't know how people do these kind of drugs for "fun" and on purpose... really?!


Hopefully it heals up nice......



Wednesday, June 10, 2015

Crohnie Quote of the Day

The other morning, my kids were eating breakfast and my eldest asked me why I don't eat cereal.  I explained that because of my illness, I can't have milk.  He said, at all?  Well, I won't die from it, but it causes me to have a lot of pain and makes me go to the bathroom, a lot!
He thought for a second and then said something I wasn't expecting, and at the same time was brilliant and simple......use a fork.


So, my Crohnie Quote of the Day...from my 9 year old...


"If you want to eat cereal and are lactose intolerant......use a fork"

.

Wednesday, May 27, 2015

Remicade : Day 1037 Fast-Tracking

Infusion day today and I lucked out...there was a cancellation and I got in early !! 
Also, today was the first day of "fast-tracking", so instead of a 2 hour infusion, it was an hour and a half.  And yes, that half hour makes a big difference =)  Fast-tracking is basically where they start the drip a little faster than normal.

We're starting out at an hour and a half to see how I tolerate it and we'll go from there.  If everything goes well after a few more infusions, the next time I see my specialist maybe I can get her to take it down to an hour.  So far, so good.


I figure after almost 3 years on the juice with no problems, it was time to start.
Today, I don't think I looked at the clock once, but I did get really tired real fast.  More than usual. 
I could have easily taken a nap right there....but I'm saving it for tonight that I might sleep.......bbbbwwwwaaaahahahahahahahahaha!!!   I'm so funny

Tuesday, May 19, 2015

World IBD Day

Yes....we have "a day"!  A day to bring awareness to all Inflammatory Bowel Diseases, a day to bring awareness that millions of us suffer in silence, a day to bring awareness that millions of us are in intense pain and others don't even know it and a day to bring awareness that the cost of medicine for us is so expensive, many of us go without.
IBD is an invisible illness and its real, it's not a "stomach ache" or "in my head" and believe me, if we could "just eat something" to gain weight, we would.  And yes, I really do have to go to the bathroom that many times !!


Wear some purple today !!



Monday, May 11, 2015

A Crohn's Reflection - Mother's Day

I remember the day like it was yesterday and I don't think I will ever forget it, for a number of reasons.  November 25, 2002 was the day that breast cancer took my mum's last breath away.  There have been 12 mother's day's since then and each one that comes and goes I always think how even though she was struggling for a few years in her own battle with cancer, she would always make sure I was taking care of myself. Parents are like that I suppose. 
She had stage 4 breast cancer when she was diagnosed.  I took her to the doctor that infamous day and when she came out crying, I knew.  I talked to the doctor myself afterwards telling me that there was nothing he could do for her other than extend her life a little longer.  I never told her that of course but gave her the same positive advise she always gave me, "you'll get through this, one day at a time".  She tried to remain positive through the whole experience, even with the hair loss and chemo treatments, calling her chemo the "red army" (the chemo juice was red), and hoping her hair would grow back curly, or at least "wavy", like mine.  She even had a double mastectomy and still she remained up beat and was cancer free for a year, until that fateful day in June 2002 when the doctor informed her that it had returned and returned with a vengeance. It had spread to her hips, liver, stomach, lungs and brain.  She had found out the day of my brothers wedding and she tried to have a good day, but you could see it in her face and some of the pictures from that day.  My fiancĂ© and I pushed our wedding ahead from June 2003 to September of 2002 so she could be there, lying to her that it was for another reason and not that we didn't think she would be around.
It came fast and hard this time and by October she was admitted to hospital because she wouldn't, or couldn't, eat.  At this point she new it wouldn't be long, but still asked how I was doing and making sure I was taking care of myself.
She went down hill fast after that and we all got called in to hospital one night by the nurse fearing she wouldn't last the night....but she did.  We insisted that we take her home for her last days as she never wanted to pass away in a hospital.  She lasted another week at home before finally on a Monday morning while we were all getting ready to go back to work after having time off, she stopped breathing and she was gone.

I wanted to write this to show how my mum, as I'm sure other mother's are, was still concerned that I took care of myself with my disease whilst fighting hers.  My only regret was that she never met any of my children. 

Mum's are a special breed and I see some of my mum in my children and I see it now in my wife in how she takes care of me and our children.

Thanks to all the mothers out there and Happy Mother's Day.

Sunday, May 10, 2015

Saturday, April 25, 2015

Crohnie Quote of the Day

It's amazing how one small change to your diet, makes one large change in your life.


.

Tuesday, April 21, 2015

Remicade : Day 1001

Well, there we have it.  More than 1000 days with my body full of Remicade.
One thing I have noticed since eating more often, is that I am not AS tired as I used to be.  I still am, just not as much.  I use to get tired, or fatigued, about a week prior to infusion day, but this time, I started to get tired about a day prior.  So...an improvement.  I'm still exhausted after the infusion, but still working on that.


1000 days down.....

Thursday, April 9, 2015

You Might Be A Crohnie

If you can feel good one minute and be in hospital the next...literally
...you might be a Crohnie

Thursday, April 2, 2015

Crohn's, Sweat and Tears

Last week I saw a dietician to get started (or restarted) on an eating plan.  High protein, low fibre, little and often.  So, I have my regular breakfast, lunch and dinner, but also snacks at 9am and 3pm and another around 8pm.  I already feel I have a little more energy throughout the day.  I usually ate around 6am before work and not again until lunchtime, mainly because I didn't want to have to go to the bathroom at work (I come home for lunch).
With the help of a fellow Crohn's patient I met on Twitter, I have a 3 circuit workout program which I started on Wednesday.  DAMN!  am I out of shape!  I only did 4 exercises, 6 reps of each and I was so out of breath I had to lay down.  I'm sensing this is going to be a long process.  I certainly don't have the body of when I was a competitive skater.....no where near.
But....I have the ball rolling and have to keep it rolling, wish me luck!

Friday, March 20, 2015

New Crohn's Drug !!

A promising new drug treatment for us...from the New England Journal of Medicine....specifically a new oral drug, Mongersen.  It's just in the clinical stage, but results are promising.


http://www.nejm.org/doi/full/10.1056/NEJMoa1407250


I love when they come up with new treatments !!!!

Thursday, March 19, 2015

Crohnie Quote Of The Day

"Having Crohn's is like having an extremely bad case of the flu......except you throw up out your ass"




*please note that by no means am I saying Crohn's is like the flu

Wednesday, March 18, 2015

Crohn's Inspired Tattoo's

Do you have a Crohn's inspired tattoo..??  Want to inspire others with your tattoo..??
All you have to do is send in a clear photo of your tattoo +  a short description, with the subject “My Crohn’s tattoo,” to nlascurain@healthline.com
They'll feature the tattoos on the Healthline website and help inspire others with Crohn's Disease by those who aren’t afraid to let the world know that they’re survivors.


Click the link to get more information
http://www.healthline.com/health-slideshow/crohns-tattoos#2


Share 'em if you got 'em !!
.

Wednesday, March 11, 2015

Crohns Tips

Did you know that the emulsifier, polysorbate 80, is in the flu vaccine you get every year...??



Emulsifiers

Found this interesting article about a study that was recently published out of the US about emulsifiers and IBD.
Specifically the additives CMC and polysorbate 80.....time to REALLY change my diet!


http://news.sciencemag.org/biology/2015/02/common-ingredient-packaged-food-may-trigger-inflammatory-disease



Friday, March 6, 2015

Crohnie Quote Of The Day

1 teaspoon (of ice cream) = 4 minutes (until I'll have to go to the toilet)

Tuesday, March 3, 2015

Remicade : Day 952

Once again I drive the 20 minutes to the clinic, wearing my one glove on my left hand, with my iPad, wordsearch, glasses, pen and hard candy laying in the passenger seat along with the blue bag of "juice".
This trip to the clinic there aren't that many "Crohn's problems" other than the usual aches and pains.  Though I am very uncomfortable as I pulled something in my back moving a plant pot believe it or not.  All this is minor compared to what others go through each and every day.  The more this disease takes from me, the more I see it all pointless to complain.  Yes, I have problems with eating, drinking and I go to the bathroom WAY more than the 'normal' person.  I'm fatigued all the time, pain some of the time, but I have a strong heart, lungs,......well that's about all I have strong.....
Then yesterday I watched the Ellen show and saw again Tayt.  He needs a new heart.  But watching this little guy, makes me want to shake my head for the times I feel "sorry" for myself in having this disease.  See for yourself...


http://youtu.be/r5XrOS2cz0Q


If you ever feel down, just watch this guy...

Tuesday, February 17, 2015

What's Crohn's Like....??

Over the time I've been "blessed" with Crohn's, I can't remember how many times I've been asked, "what's Crohn's?" or my personal favorite, "what's Crohn's like?".  Not sure even how to answer the last one.  But it got me thinking.....how does one answer the question, what is Crohn's like?


So.  Here is my answer from MY perspective (as everyone's Crohn's experience is different)
A crohn-alogy if you will.


Imagine if you will, being tired, exhausted and worn out all the time.  Like, if you were to run a marathon at least once...everyday.  Then throw in dehydration and the constant dry mouth and thirst.  Add to that the knowledge that at any minute, and I mean any minute, you can be in hospital from an intestinal block or a number of other reasons.  Mix in frequent bowel movements (with the occasional loss of a pint of blood or two), ten, twenty, thirty times a day.  Sometimes 10 times in an hour.  Stir in abdominal pain, abscesses, fissures, fistulas, dry skin, scars, hemorrhoids, kidney stones, Iron and B12 deficiencies and a bleeding rectum. The fetal position is one of your favorite ways to lay down.  Pillows are your new best friends.  Fold in daily doses of pill after pill after pill and monthly liquid doses of a biologic drug slowly dripped directly into your vein that costs more than your first car......
then, and only then, will you get a sense of what ONE persons life is with Crohn's.


....what Crohn's is like.....for him.


.

Sunday, February 15, 2015

Crohns Awareness

Let's keep this campaign going.  Only 6 more reserves needed to start it back up!!  I have mine reserved, how about you...??
The more awareness the better


http://teespring.com/crohnsdisawareness?utm_source=twit

Friday, February 13, 2015

Saturday, February 7, 2015

Crohn's Tips

Crohn's Tip #75 - "make a list of every hospital visit, when, why, meds, doctors and take it with you whenever you go in to emergency"

Crohn's Tips

Crohn's Tip #27 - "drink lots of water prior to infusions. You may really gotta pee, but it'll make your veins "pop" for that IV needle"

Crohn's Tips

Crohn's Tip #1 - "You are not suffering alone - there are millions of "us" right there with you"
.

Wednesday, January 28, 2015

You Might Be A Crohnie...

If you scan a building while you're out, not for the exits, but for the bathrooms
...you might be a Crohnie



Tuesday, January 20, 2015

Remicade : Day 910

Closing in on "1000 days", but until then, everything is status quo.
A little scare with the infection, but Cypro to the rescue and gone after a few days.  And yes, I DID keep the Cypro going for the full 7 days =) even though it cleared up after a few days.
I hope the body keeps liking the "juice" for a long time cuz it's working.  There was a guy today with me getting infused, who's been on it for over 5 years.


Keep on keepin on

Sunday, January 18, 2015

Awareness Video

Saw this on Twitter today and had to post it.
Great awareness video.  I always thought Christina Perri's "Human" song was a great "awareness" song.
Take a look...


http://youtu.be/r-4h0x1wlf8



Thursday, January 15, 2015

Crohnie Quote of the Day

Nearly 200 genes have been linked to Crohn's Disease, but not everybody who inherits these genes will get the disease.


.

Saturday, January 10, 2015

For King and Country

One of this bands members, Luke, suffers with UC and wrote this song whilst battling an attack.
I wanted to share, it hits home.


http://youtu.be/4_zcjxDdZ1s


For King and Country - "Without You"

Sunday, January 4, 2015

Welcome 2015.......??

Decided to go to Emergency last night with discolored urine.
Now, normally, I wouldn't do such a thing, for something as simple as discolored urine because usually it's just that I'm not drinking enough water, BUT it was dark amber color and because I'm on Remicade, I immediately thought there was something wrong with my liver. 
It's been like this since Friday morning, but I wasn't worried.
So, last night at 9, I told my wife that I was heading in, just in case.  Luckily I had just had my bloodwork done that morning, so I didn't need to get any done at hospital.
It wasn't THAT long of a wait in Emergency, about 3 and a half hours, sitting in chairs before getting called in back, but after another hour wait, I got the news I wanted to hear.....not my liver.
Turns out, it's just a urinary tract infection.  Testing showed blood in the urine, but I have no pain at all....zero.....so it's really weird.  I have no idea how I got it, but there it is.


On a side note, I always have to shake my head whilst waiting in chairs by the idiots that come in to Emergency.  I feel like standing up and make an announcement....


"Attention everyone!!  This is Hospital Emergency, NOT a walk in clinic.  If you don't want to wait like everyone else, go home!!  It's NOT first come, first serve!!  Stop asking the triage nurse "how much longer"...THEY DON'T KNOW!!  Now, just sit down and shut up until your name is called!"



Thursday, January 1, 2015

Happy New Year !!

Happy New Year to everyone !!  All the best for a happy and healthy 2015 !!
I can honestly say, I haven't gone to hospital all year!!  LOL