Happy Crohnie New Year

As we near the end of 2017 and enter into a new year, I want to wish everyone a happy and healthy 2018.
I guess I should say, "healthier" 2018. Us chronic illness sufferers will never be "healthy" unless a cure is found.
Having said that, I want to thank everyone that has read, contributed and/or commented on my blog.  We're all here to help one another get through whatever we are suffering from.
So, if you are suffering from Crohn's, UC, IBD or any chronic or invisible illness, my hope for 2018 is that your illness will be less painful or debilitating and that we all stay out of hospital

Happy New Year !!

You Might Be A Crohnie...

If you get to sip clear broth while everyone else stuffs their bellies with Christmas turkey, stuffing, etc.
...you might be a Crohnie

'Twas The Night Before A Crohnie Christmas

Every year for the past 12 years, I read Twas the night before Christmas to my kids on Christmas eve before they go to bed....here's the Crohn's Disease version that I don't read to my kids...
***warning: language***

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

He was dressed all in fur, from his head to his toe,
He looked very fatigued, he moved really slow.
A bundle of toys he had flung on my chair,
He looked in pain, it must be a flare.

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

The bags under his eyes, I saw his fatigue
That comes from living with this dam Crohn's Disease.
He had a broad face, (must be the Prednisone),
If he didn’t hurry, he would soon need the throne.

He was chubby and plump, a right smelly old elf,
And I laughed when I saw him, in spite of myself!
The moon face, mood swings and twitch of the head,
Soon gave me to know it was for sure the Pred.

He spoke not a word, but went straight to the bathroom,
And filled my toilet with a splat! and a KABOOM!
And laying his fingers, covering his nose,
Giving a nod, up the chimney he rose!

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

Merry Christmas everyone, hopefully it is disease-free. At least for one day

-Vern

Crohnie Advent Calendar

Opening the last bathroom stall door this morning to find...

.... hope.

Merry Christmas and all the best for a happy and healthy 2018!

12 Days A Crohnie Christmas

Every year I repost my 12 Days....make sure you sing it !!


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

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


Merry Christmas everyone!

Make sure to come back tomorrow for my Twas the night before a Crohnie Christmas!!

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

raspberry tea  !!!!!  (for those pesky kidneys)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 water !!!!!  (cuz you can never stay hydrated)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

sitz bath kit !!!!!  


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

protein drinks !!!!!  


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

crossword puzzles  !!!!!  (for hospital days)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

chicken broth  !!!!!  (for liquid diet days)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 epsom salts !!!!!  


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 large bottle of 'poo-pourri' spray !!!!!  


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 ostomy bags !!!!!  (for my ostomy friends)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 new pants (with adjustable waist) !!!!!  (for weight loss/gain)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 peanut butter !!!!!  (my goto protein)


Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 vitamin D !!!!! 



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 protein bars !!!!! 



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 a T-shirt that says "I know I don't LOOK sick" !!!!! 



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 a pillow !!!!!  (cuz we all have to take some time to just rest)



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 Remicade !!!!!



Email me at crohnsltsd@gmail.com with what you'd like to see

Remicade : Day 1961

Another 6 weeks....another infusion.  Wish I didn't need to do it, but, it keeps the Crohn's mostly at bay.  These past 5 years have been "easier" than the 25 before I started on remicade.  But there are always the things attached to Crohn's the remicade doesn't take care of...fatigue, joints, psoriasis, fissures, abscesses, etc, etc, etc.

On the positive side, the weight is up again, 78 kg (172lbs, 12 stone).  It's taken 30 years, but I am finally back to the weight I was before I got sick!!  I am definitely NOT the fitness level or muscle tone I once was, but I'll take it......for now.

At the clinic yesterday while getting infused, a lady came in to get her first infusion and OMG, the dramatics!  You'd think she was being tortured or something.....just from getting the needle in.  Now, don't get me wrong, I've had hundreds of times where my veins are barely visible, but never did I groan after I had it done.  Especially when her's was successfully done after the second "poke".  For 30 minutes she moaned and groaned while being infused with saline BEFORE the remicade went in and her arm was fine, no swelling or irritation.  Thank goodness my infusion is only an hour, I don't think I could take it any longer.  I don't hear that much noise when I'm in the hospital!

Wellllllll........

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

 multi vitamins!!!!!



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

pre-packed hospital bag !!!!!



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

B12 !!!!!




Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

underwear !!!




Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find...

liquid iron !!!




Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

Opening the bathroom stall door this morning to find....

toilet paper !!!



Email me at crohnsltsd@gmail.com with what you'd like to see

Crohnie Advent Calendar

That time of year again.  The weather starts to get colder, the thicker coats come out, Christmas trees and lights go up and the advent calendars start to be opened.
I bring out my special Crohn's calendar and open a door each day.  This year calendar looks like a large shopping mall with 24 public bathroom stall doors.....

Let's get this party started shall we...

Opening the first bathroom stall door to find....

prednisone !!!

Tune in each day to see what's behind each door.

Email me at crohnsltsd@gmail.com with what you'd like to see

You Might Be A Crohnie

If "going out" for a couple of hours, takes days to prepare
... you might be a Crohnie

You Might Be A Crohnie

If you often feel like a pin cushion
... you might be a Crohnie

Remicade Levels

Saw my Gastro this morning, my 6 month check up, this time I came with a list.
My Remicade levels are smack dab in the middle, which is great. She seemed happy.  Had my results from MRI and it shows that there is no "significant difference" than my last one in 2015, though shes worried about maybe a tumor "hiding" behind scar tissue.  I need to go for a sigmoidoscopy every year now instead of every two years.  The good news is there is no inflammation showing...yay....just scar tissue and significant perianal disease.

Today was the day I was suppose to have ostomy surgery but I had cancelled it.  I didnt NEED the surgery, just the surgeon recommended it as there is no way to fix my perianal disease.  It doesn't mean I wont have the surgery one day, just not today.  Its taken me 30 years to be comfortable and accustomed to my way of life, I dont want to start again right now.  Many reasons, but the main one is mentally, I'm not ready

So, other than the Crohn's disease, perianal disease, anal stricture, joint pain, scalp psoriasis, fatigue, etc.....I'm good.

You Might Be A Crohnie...

If you have read every magazine at the doctor's office and get excited when new ones arrive
...you might be a Crohnie

Thank you!

Along with some other great IBD bloggers, this blog was noticed by Medical News Today as one of the top 10 Crohn's Disease blogs.
Its great to be noticed and am happy that others are getting something from what I have to say about a disease no one wants to talk about.  Having said that, with my fellow bloggers, more and more IBD is coming to the fore front to get it out there, to eliminate the stigma. 
It's not just a "pooping" disease, there is so much more.

Thanks to Medical New Today !!

Remicade : Day 1919

Infusion #47, almost 5 and a half years now and still going strong.
Remicade has reduced my symptoms drastically, but hasn't eliminated them totally and I'm OK with that. 
The days sometimes are tough and tiring, but at least I haven't ended up in hospital for them and I can deal with my Crohnie problems from the comfort of my own home instead of the hospital environment.
Don't get me wrong, it's good to know that the hospital is there if I need it, I'm just glad I don't need it.  I still need to make a decision regarding an ostomy or not.  It's a hard decision but I think I'm leaning to the "not right now" side of things.  It's taken me almost 30 years to get use to doing things a certain way and dealing with my Crohn's, I don't know if I want to learn it all over again. 
Right now, I don't "need" the surgery, but when I do, or if I do, I'll deal with it then.

The Faces of Crohn's

So, have you ever wondered what Crohn's looks like?  And I don't mean the graphic photos of intestines etc, I mean the people.  I personally have become an expert on "looking well" instead of looking sick.

The face of Crohn's/IBD can be your mother, father, brother, sister, child, grandparent, friend, foe, teacher, co worker, boss, neighbor, celebrity, sports star, Olympic athlete, etc.
As an invisible illness, you just never know who's suffering and a daily basis.

You want to know what someone with IBD looks like?

It's me.

New VIDA Skirts

I have added more wearable art to my VIDA collection
View my whole collection here: Shop VIDA

Crohns Disease Essentials and Emergency Kits

Again, from IBD News Today, a fantastic column by Mary Horsley
I would encourage everyone to follow her blog It Could Be Worse

IBD News Today

Protein Deficiency Research

I came across this study done in the Netherlands regarding the SHIP1 protein.
We're getting closer and closer....

IBD News Today

Crohnie Quote of the Day

Healing is not controlling damage within;
It's not allowing damage to your life.

You Might Be A Crohnie

If you can "extreme-multi-task" (do everything while sitting on a toilet)
... you might be a Crohnie

You're Gonna Put That Gel Where...??!!

Further to my visit to the surgeon, last week I had my MRI appointment.  I've had MRI's before, so this was old hat to me, nothing new, nothing exciting......or so I thought.
I arrived early, as I always do, and sat in the waiting room with all the other medical imaging "hopefuls", anxiously waiting for your name to be called.  You know that feeling...when the technician comes out and everyone sits up hoping to hear your name cuz you don't want to wait anymore, either because you just want to get out of there, or simply because you don't want to wait to catch something that's floating around in the air. Because hospitals are so clean... not.
My name was called and was handed a packet of paperwork and told to follow the blue line to MRI...another waiting room, good lord.  Not so much of a wait this time, but then had to get changed into the fancy blue "smock" and comfy yellow pants and sit some more in the waiting room.
I got called into the large MRI room which actually is dwarfed by the huge MRI machine and told to lay down while they put on IV into my arm.

Then the lovely news I wasn't told about....

We're going to put in some rectal gel for contrast.  Ummmm, excuse me?  I actually had to get clarification on this because after 30 years of testing, I have never had rectal gel shoved up my ass. I had to explain to the technician that because of my anal stenosis, that might be a problem. There is no way you're getting a finger up there.  Even when I have colonoscopies, they use the pediatric scope and I'm OUT for that! He would have to contact the doctor on call to see what can be done. The doctor showed up and was going through drawers pulling out all kinds of things all the while telling me what he's gonna do....ummmm, nope.  He was getting all technical and explaining how he has this flexi tube with a balloon on the end and then inject the gel, blah, blah, blah....ummmmm...nope.  I then explained to the doctor how I basically only have the rectum left which is attached to my small intestine and if he injects that into me without me doing any colon prep (which I wasn't required to do), he's going to have a mess all over his nice MRI table.  It's funny how quickly he said....

ummmmmm, nope, no gel for you.

2017 WEGO Health Activist Awards

I am happy, humbled and surprised to announce that I am a top 5 finalist for a WEGO health activist award for this blog in the category of Best in Show: Blog.
Thanks to everyone that nominated and endorsed me.
Even if I don't win when the award is announced in October, it really does feel great just to be nominated.

Thanks to the judges and to everyone.

Crohnie Quote of the Day

"Fall seven times. Stand up eight."

A Visit With the Colo-Rectal Surgeon

A couple of weeks ago I was finally able to go see a colorectal surgeon to get another opinion on what, if any, can be done for me regarding the peri anal abscesses and fistulas.

This surgeon is one of the top surgeons around and deals mainly with cancer patients so I was hoping....

My specialist recommended me to her so all my files were transferred over.....all 30 years worth....so it was not a surprise when I walked into her office, the first thing out of her mouth was, "wow, you've had a lot going on"

After a good discussion and small exam, it was her recommendation that what is left of my large intestine, which is barely anything, be removed and have an ileostomy.  Not what I wanted to hear, but not totally unexpected.  She said I would have a better quality of life.

But before all that, I need to go for blood work (check), CT scan, MRI, sigmoidoscopy and then a laparotomy so she have have a close up look inside.  She's concerned about any "hidden" cancers.  Well, THAT made me feel better when she mentioned it!

I haven't posted in awhile because it's a lot to take in right now and even though I've had Crohn's for 30 years, I still now get that feeling like I did when I was first diagnosed.

You try and stay strong, but some days.....

You Might Be A Crohnie

If you need a rest....from resting
...you might be a Crohnie

You Might Be A Crohnie

If you can go months without a flare, but have one as soon as you go on vacation
....you might be a Crohnie

What Else Is Crohns Gonna Do......(*update*)

Went back to my Dr. yesterday to check my blood pressure after two weeks of being on blood pressure meds.  Good news and bad news, for me.

Good news.... blood pressure down and stable at 110/70 (yay!!)
Bad news.... more meds for me to take, probably for the rest of my life.

And even though my blood pressure is fine now, it's always going to be in the back of my mind every time I exert myself.  Something else to worry about.

At least the meds are cheap!!

.

What Else Is Crohns Gonna Do......

Crohn's likes to kick you while you're down.
On top of having Crohn's and all the fun stuff that goes along with it, I can now add high blood pressure and psoriasis of the scalp.
The psoriasis has been developing for months and months now and no help from the dermatologist.  It's because my skin cells are overdeveloping but Remicade should be helping with that, hmmm.  My GI has requested a Remicade levels check to make sure the Remicade is still working.  I've tried all kinds of shampoo for dry scalp, but nothing works.  My wife suggested using Aloe Vera, but REAL aloe vera, not the kind that's mixed with a whole bunch of other chemicals.  I found a recipe online which is aloe vera gel (from the plant itself) and coconut oil....mix it together and apply to the scalp.  Let it sit for about half an hour and wash it with a baby shampoo, or something mild.  Worked right away.  It's not gone or anything, but not nearly as bad.  I need to do it every 2-3 days for awhile before giving it a full 2 thumbs up....I've only done it once.
The high blood pressure is new.  At least since last November.  The highest it's been was 157/95 and I've been on meds for almost two weeks and the last time I checked, it was 130/80.  But now I'm tired all the time...MORE than usual!!  Great.
So lets recap.....
Crohns and all the "good" things that come with that like kidney stones, fistula's, fissures, abscesses, pain, dehydration, etc etc etc
High blood pressure
Psoriasis
I wonder what's next.....

You Might Be A Crohnie

If when you get a burst of energy you squeeze in as much housework as you can before getting exhausted and have to rest again...
...you might be a Crohnie

.

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" 

.

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.

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

You Might Be A Crohnie

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

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

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".

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

You Might Be A Crohnie

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

Crohnie Quote Of The Day

My life has changed, and I'm changing with it

-Sophie Kinsella

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.

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.
 

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

You Might Be A Crohnie

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

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!

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.

Crohnie Quote Of The Day

You Might Be A Crohnie

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

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.

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