Tuesday, July 25, 2017

Yes....I'm Fine


Ah...the proverbial answer to the question, "how are you?" .... I'm fine. 
And it's not a lie.  Not really.  If I wasn't "fine" I'd be in hospital, generally.  
And in that case it would be:

Please rip out
All my
Intestines
Now!

I haven't felt THAT way in quite sometime now (knock on wood) thanks to Remicade, but as we all know, it can change in an instant.  But when I say "I'm fine" it means I'm fine for "ME".
The Crohn's is tolerable and manageable and I'm doing "fine".

Then again, if I'm not "fine" I will probably tell you I'm "fine" because...really....I don't want to talk about it.  So "fine" is the defense mechanism.  Ninety-eight percent of the time, I really don't want to talk about it and the other two percent I'm too sick to talk about it.

And really...if I was asked "how are you?" and I gave a long answer as to why I'm NOT fine...would you really understand?  Or would you just listen politely nodding your head and after I'm finished telling you how well I'm not feeling, you're just going to say, "sorry, I wish there was something I could do or say to make you feel better".  So unless you have the "cure" or have just won the lottery and are giving me some so I never have to work again...

"I'm fine, thanks" 

.

Thursday, July 20, 2017

Road Trip (Crohnie Style)

Long gone are those spur of the moment road trips.  Now it's days of planning and lists.  Take for example our recent family 3000 km, 8 day road trip.
Planning the route is simple.  We are making 7 total overnight stops in 6 cities/towns.  Sounds simple enough.  Except, I also noted each hospital or heath centre in each of those places and the GPS notes gas stations and places to eat, not necessarily for gas and food, but for the washrooms. I generally avoid eating while driving, or at least eat very very light until we get to our stop.
Packing for the wife and kids is fairly straight forward...then there's me.  I make sure I have at least one pair of underwear for each day, plus extra just in case.  I think I packed 11 plus 5 pairs of shorts, cuz you just never know if you have an accident or not. Also not to forget my B12, D and fish oil tablets, not to mention my Imuran. Oh yeah!!, and my new favorite toiletry--- poopourii spray for the toilet.  Works great.  I also can't forget my pad for the hotel beds that I got from the hospital for those nights you might have an accident.
So of course the morning we head out....I wake up with a head cold (which I still have) and the peri anal abscess acting up....greeeeeat.  But we Crohnies sometimes just have to soldier on.  It was a family vacation and we can't disappoint the ones we love.
We have a comfortable Toyota Rav4 so the drive was great and made it to our first stop over in about 8 hours and I needed the lie down because the next day was a lot of walking.  We drove through Jasper National Park and stopped to walk on Athabasca glacier, so cool and so beautiful and after a few more stops in the Rockies and some hiking, the next stop by that evening was a welcome relief and the bed was soooooo inviting, not to mention the toilet.  The abscess became larger the next night in Edmonton, Alberta but luckily drained on its own the following morning in time to go to West Edmonton Mall to shop and my kids could enjoy the attractions.  But after 7 hours of walking around, along with the coughing still from my cold, my body was done in and couldn't wait to rest. Onward the nest day to more sites in Drumheller, Alberta to see the dinosaurs and the Hoodoos (naturally sculpted rock formations).  My kids enjoyed climbing as I stayed below, but that's okay, as long as they enjoyed themselves, that's what matters.  I don't like having my illness affect their enjoyment.  The dinosaur museum was cool, but the hotel was a welcome relief for my bones that's for sure.  On to Calgary, Alberta next day and the Calgary Zoo.  I never realized how large this place was!!  Worth seeing, but next time I think we would do it in 2 days instead of one, especially with and abscess between your legs!! Banff, Alberta the next day and the beautiful National Park.  Its such a great mountain village to walk through with spectacular views and blue blue water.  Not a bad day health wise.  Last day was the drive home after letting the boys have one last swim in the pool.  Needless to say they didn't want to go.
Each of the 8 days, the abscess got big, but then drained and I must have lost about 5-10 pounds by only eating sparsely during the day and only really eating dinner time.  But I never really felt hungry.  Maybe because I drank alot of water....alot.
Overall a great family trip.  I would do it again.  With my fingers crossed my health holds.  At least doesn't get worse than what it is.  I always have it in the back of my mind, it never leaves.
Oh yeah.... and yes, I used 10 of the 11 pairs of underwear.

Sunday, July 2, 2017

You Might Be A Crohnie

If you know the difference between a fissure, a fistula and an abscess AND know how to deal with each one
... you might be a Crohnie

Tuesday, June 13, 2017

You Might Be A Crohnie

If you start NAMING your peri anal abscess's...
you might be a Crohnie

Tuesday, June 6, 2017

Crohnie Quote of the Day

As I enter my 29th year since diagnosis I reflect back on what my surgeon told me after my first resection and he wanted me up and walking around. It's today's quote of the day...

The sooner you're up, the sooner you're out


Tuesday, May 30, 2017

Remicade : Day 1772

I forgot to post about my last Remicade infusion and again, not much excitement to it.
I go in, stuff my hand under a heating pad, crank it up to high to make the veins "pop", weigh myself, the nurse slides in the perfectly popped vein, get the infusion and done.
This time there was an older lady, she looked as if she was in her 80's, sitting across from me all curled up in a ball in the chair and all I could think about is....I don't have it so bad.
She looked like a little child sitting there curled up, skinny, frail, sleeping. I remember a time when I use to look like that.
I've been through a lot over the 30 years with Crohn's and after seeing her, I have to keep reminding myself that I don't have it as bad as some and in a way, I guess, I'm "lucky".

Friday, May 12, 2017

Special Thanks

I'm not one to "brag" or even give that impression, but I feel I need to give thanks to Healthline.com and Mytherapyapp.com for recognizing this blog.


Healthline.com as one of the Best Crohn's Blogs for 2017 and
Mytherapyapp.com for one of the top 19 IBD & IBS Blogs for 2017 (Top Gutsy Writers)


Just to be recognized amongst some of the best blogs out there is truly an honor for me.
The thought that this blog might be helping someone going through what I have spent almost 30 years doing, is truly humbling and I truly appreciate it.


Thank you from the bottom of my heart.


~Vern

Tuesday, May 9, 2017

You Might Be A Crohnie

If you pull a muscle while going to the toilet...
you might be a Crohnie

Monday, May 8, 2017

Tuesday, May 2, 2017

Crohn's Obituary *repost*

I posted this about 4 years ago and I thought I would repost it because today at work I got to thinking, "would I ever feel 'good' again?", "would there ever be a day that I can go out somewhere and not have to worry if I can even make it?" 
Would there ever be a day that Crohn's Disease....dies?

Here's what I would write as an obituary for the disease....

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 85 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.

Saturday, April 29, 2017

Go Figure

***WARNING: POOP TALK***

Having Crohn's for almost 30 years, I'm still learning things.  The past few days for example.
I've been having bloating and pain, rushing to the toilet only NOT be able to go.  I have the feeling to go, but.....nothing.  Two days of anxiety, pain, bloating, worry and WTF!; today, I might have figured it out.
I didn't eat today except for some toast and tea in the morning trying to get my gut to relax.  Still running to the toilet...and nothing...again and again and again, sometimes 4-5 times in an hour.
Then the "ahhhhhhh" moment tonight.  Not only because I finally went, but probably the reason why.
Ninety-nine percent of the time, it's water, but this time it was semi formed!!  I haven't had that in decades!  Which is why I was hurting I think.  What's left of my large intestine couldn't handle the non watery stool.
The lack of pressure now is such a relief, to the point where I can actually sit down!!
Welllllllll, except for the peri anal abscess, but that's another story.
 

Thursday, April 20, 2017

You Might Be A Crohnie

If you have the energy of a sloth but can still get to the toilet in under 3 seconds...
you might be a Crohnie

Friday, April 14, 2017

You Might Be A Crohnie

If you constantly adjust your belt notches throughout the day
...you might be a Crohnie

Thursday, April 6, 2017

Chronic Illness "Jeopardy"

So, last night I couldn't get to sleep and finally just got up, went downstairs and laid on the couch to watch some TV.  Flipping through the channels, I briefly saw a Jeopardy category called "4 Letter Words" so I stopped, thinking maybe some brain work would make me tired.

One of the contestants picked the category and the first one was, "high quality".  No one got it, but the word was "fine".  I immediately talked back to the TV (cuz that's what I do) and said, "that's so not the right clue for the word. The clue should have been, 'people with chronic illnesses describe themselves as this when asked', answer, 'what is 'fine' "

I guess it was too long of an "answer", but I would have nailed it!

Wednesday, March 29, 2017

Remicade : Day 1709

Coming closer to 5 year anniversary with Remicade.  Now it's just "routine" for me every six weeks.  Go in the the infusion clinic, weigh in, temperature taken, blood pressure taken, wrap my hand in a warming blanket set to high, to make the veins in my hand "pop", get hooked up to the juice and an hour later, I'm done.

Though....

Since January my blood pressure has been high.  Not normal for me.  I've never had a blood pressure problem.....ever.  But it fluctuates throughout the infusion.  Today was 152/103 to start, then down to 148/99, then up to 153/100 and at the end 163/109!!  What the hell!  The nurse sent notes with my past 6 months vitals to the Gastro to see if she has an opinion.
Not looking forward to the answer.  I have enough problems, thanks.

Saturday, March 18, 2017

You Might Be A Crohnie

If you can do a complete wardrobe change while sitting on the toilet...
you might be a Crohnie
.

Friday, March 17, 2017

Facebook

Come see me on Facebook

Crohns-Leaving The Seat Down

I have everything from this blog but also other information too!!
Come take a look and follow me on Facebook!!

Monday, March 13, 2017

Oops.......Crohn's Did It Again!

Last week, my wife and I were trying to figure out what to do for the first week of spring break with the kids.  First we thought maybe head up to Edmonton, Alberta to visit family and they could see the West Edmonton Mall....but after talking with my cousins, the weather would still probably be snowing and the thought of driving through the Rockies in the snow, just wasn't that appealing to me.  Next we thought we'll head to London, Ontario, again to visit with family.  But alas no..for the same reason, snow.  Good thing too, big snow storm going through there right now.  We finally decided on staying within the province and head over to Vancouver Island and Victoria to see her family and take the kids to the "touristy" places like the Royal BC Museum, Craigdarroch Castle, The Bug Museum and Miniature World.

But that was a week ago....

We all should have left on the ferry this morning but only my wife and kids were on it and I am home laying on the couch typing this post.  Crohn's did it to me again.
About 4 days ago my peri anal abscess decided to come by for a visit.  I was hoping it would have calmed by the time we would have to leave but here I am.  It got worse each day and then finally started to drain...I was hopeful.  But it was just toying with me.  I stopped eating and switched to liquids in a desperate attempt to calm my intestines down enough to relax the abscess.  To no avail.  But, it hasn't got worse.  Nor has it got better.
Yes, I could have taken the chance and gone but if it got worse, it wouldn't be fair to my wife and kids if I was laid up in the hotel room.  It's difficult to walk, sitting is an adventure in itself, not to mention I'm just tired and exhausted probably because my body is busy fighting what's going on inside.  So I made the difficult decision to stay behind and rest, or try to.  I was looking forward to going.
It goes to show you that with this disease, plans are always "tentative", never final (for me anyway). One day everything is going along as normal as normal can be with Crohn's, then the next, it comes back to say "hello".  Just enough to remind you that it's there.  Waiting.  Ready to pounce.  Any time.

Saturday, March 4, 2017

Is Your Crohn's Talking To You?

I had to repost a post I did in 2011 because lately my guts have been "talking" to me...

In the peace and quiet of my bedroom, lying half asleep, I hear it.  
Faint at first, but loud enough to make me wonder, what's that!?  
I shrug my shoulders and close my eyes and try and go back to sleep.  
Then I hear it again, a little louder this time.  
My heart starts to beat a little faster wondering, what's that!?  
I'm hesitant to get up and take a look around, cuz you never know, but, what's that!?  
I roll over and take a look at my wife lying next to me and I wonder, should I wake her?  
No, I'm the man, I can handle it.  So I slowly and quietly get out of bed and go take a look From the top of the stairs I hear it again, what's IS that!?  
Even louder now, so I slowly go downstairs to have a look.  
I turn on all the lights and listen.......I hear it again, even louder than ever!!  
What the f*&@ is that!!??
  
Then realize it's just my gut talking.  Ohhhh, the life of a Crohn's sufferer.

.

Friday, March 3, 2017

Saturday, February 25, 2017

You Might Be A Crohnie

If your ass feels like 3rd degree burns from going to the toilet every few minutes for 9 hours...
you might be a Crohnie
.

Friday, February 24, 2017

Vitamin D

There's been a lot of talk lately about the benefits of Vitamin D especially with IBD patients and all I can say is....why has it taken so long?!
I've been taking Vitamin D for years now and have seen the benefits but especially this year.  I use to take 1000 iu every few days for years because I found that it would upset my insides if I took them more frequently.  This year, as I'm "feeling better" (as far as a Crohnie can feel better) I decided to start taking them everyday starting last September.
Now, keep in mind, I usually end up in hospital between the October-January months for some sort of flare up, normally the peri anal abscess acts up or major dehydration....you know, the usual.
My kids have been sick a couple of times this year with the usual "kid colds" which I catch very easily....but for me?  Nothing.  Nadda.  Zilch.  Zero.
And the only thing really that is different than any other year, is my intake of Vitamin D.  Could there be other factors working here...sure, but I can't help but think that this one little Vitamin held back some of the worse things this year.
Now, it's only been 5 months since taking it everyday, I'll see how it goes for another 5 months before getting really excited.
After almost 30 years with this, could it be I go a year without any problems..??

Stay tuned......

Sunday, February 12, 2017

Instacrohns Meet'n'Greet

There's going to be a meet n greet in May for Crohn's, Colitis and IBD sufferers.
It's going to be held in London, England, on May 27, 2017 put on by Instacrohns


Go here www.instacrohns.com/events to register and to get more information.


Get a chance to meet up with people from all ages and walks of life and share our experiences.



Register now!!

Thursday, February 9, 2017

You Might Be A Crohnie

If after you finished getting dressed, you already have to change your underwear
...you might be a Crohnie

,

Friday, February 3, 2017

Crohn's and Fitness : Part 4

Finally back at it after months of not going to the gym because of my Crohn's.
I kept putting it off, cancelling my trainer (which I felt awful about) and all because I felt...well....zero energy to do anything.  My Crohn's was flaring off and on and I tried working out at home but get through a couple of exercises and had to stop.
It happens every year through the winter months, my Crohn's I mean, at least this year I haven't ended up in hospital for anything.
So, I'm back to the gym and working out every other day at home, still working on the core.  But then again, my core is the weakest part of my body due to the surgeries. I love my trainer, she's very understanding and changes up my routine to accommodate my disease.
Working for that "beach body" for the summer.

.

Monday, January 23, 2017

Crohnie Quote Of The Day

In order to stand on your own two feet again, you first have to get off your ass

Wednesday, January 18, 2017

You Might Be a Crohnie

If trying to eat healthy means NOT going for the salad...
you might be a Crohnie

Tuesday, January 17, 2017

Crohnie Quote Of The Day

That sudden awful guilty feeling when your child says to you, "my tummy hurts"

Thursday, January 12, 2017

Crohnie Quote Of The Day

Some days you want to go out with family or friends and that's great, but some days you just want to stay home and relax on your own.....and that's okay too.

Wednesday, January 4, 2017

Remicade : Day 1625

Well, Happy New Year everyone.  It's a new year, but the same old disease.


A little hard time getting the IV in this time and the only thing I can think of as to why, is the cold weather.  Even though I wear a glove on my left hand (yes even in the summer) and us the heating pad, she still had a hard time finding a good vein.  But that is the life of the Crohnie right?!
Today was my 40th infusion, almost 5 years now, and the only regret I have with Remicade is that I didn't start it the 2-3 years prior, when my Gastro suggested it.


Oh well, its working now and that's all that matters.