You Might Be a Crohnie

If you think you're feeling better but your IBD starts to laugh at you
... you might be a Crohnie

Goodbye 2019

Looking back at 2019.... not very exciting really, as far as my crohn's is concerned.

I only had one hospital visit for my pesky little peri anal abscess which included a minor surgery and 24 hours admission.

My Remicade infusions were going fine, but I was starting to feel tired all the time...all the time...so after several tests, including a colonoscopy, it was determined that my body was becoming immune to the drug and it was time to start something new. So, having said that, my 2020 will start with a new drug, Humira. My first injections start January 2 and as I have never injected my self, ever, it should be an interesting way to ring in the new year. I need to get 4 injections the first day.... fun.

On the upside, I was nominated for two WEGO health awards, which is always a great honor. To be recognized by your peers is a humbling experience and I don't take it lightly.

In 2020, I'm looking to maybe meet some fellow IBD'ers or other chronic illness fighters. I have had crohn's for over 30 years and have yet to meet fellow warriors, so that's somewhat of a new years resolution I guess.

Finally I'd like to thank everyone that has come by and read my blog, left comments, emailed me or contacted me through Twitter and Facebook. Your support and input has been uplifting and I appreciate everything, thank you.

Happy new year everyone and all the best for a happy and healthy(er) 2020 !!

~ Vern

Crohns Advent Calendar : Day 25

Opening the bathroom stall door to find:

....... hope   !! 

Hope....they will find the cause
Hope....they will find the cure
Hope....that we all spend as little time in hospital as possible
Hope....that all Crohnie's and all IBD'ers around the world, have the most healthiest 2020!

And that closes the Advent calendar for another year.  
Looking forward to next year.
Thanks for stopping by!!


Have a very Merry Christmas and all the best for a happy and healthy 2020 !!!!

~Vern

'Twas the Night Before a Crohnie Christmas

Every year for the past 14 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 might read to my kids this year as they are older, but I'll still stick to tradition and read the classics.
***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 oaf.
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

Crohns Advent Calendar : Day 24

Opening the bathroom stall door to find:

  a spray bottle of "Crohn-Away" !!  (for those days you just want it to go away) !!  

See you tomorrow for the last door.

12 Days a Crohnie Christmas

Two days til Christmas and here are my 12 days for IBD'ers

Now everyone sing......

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!!!

Crohns Advent Calendar : Day 23

Opening the bathroom stall door to find:

  Free pass through the ER !!  (no more waiting)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 22

Opening the bathroom stall door to find:

  Tylenol 3's !!   

See you tomorrow for the next door.

Crohns Advent Calendar : Day 21

Opening the bathroom stall door to find:

  Oxy Clean !! (essential for laundry days)  

See you tomorrow for the next door.

Crohns Advent Calendar : Day 20

Opening the bathroom stall door to find:

  a T-shirt that says "I know I don't LOOK sick....." (it's easier this way)  


See you tomorrow for the next door.

Crohns Advent Calendar : Day 19

Opening the bathroom stall door to find:

  More toilet paper  !!  (cuz you have already run out)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 18

Opening the bathroom stall door to find:

   Humira !! 

See you tomorrow for the next door.

Crohns Advent Calendar : Day 17

Opening the bathroom stall door to find:

   Colon prep !! (its not wanted...but needed)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 16

Opening the bathroom stall door to find:

  Heating pad !! 

See you tomorrow for the next door.

Crohns Advent Calendar : Day 15

Opening the bathroom stall door to find:

   Dry shampoo !! (best thing for hospital)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 14

Opening the bathroom stall door to find:

  Protein bars !! 

See you tomorrow for the next door.

Crohns Advent Calendar : Day 13

Opening the bathroom stall door to find:

  New, fully loaded, iPad !! (it gets boring in hospital)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 12

Opening the bathroom stall door to find:

  Sweat pants !!

See you tomorrow for the next door.

Crohns Advent Calendar : Day 11

Opening the bathroom stall door to find:

  Poo-Pourri !!  (your friends and family will thank you)

See you tomorrow for the next door.

You Might Be a Crohnie

If your hospital records read in volumes instead of pages...
you might be a Crohnie

Crohns Advent Calendar : Day 10

Opening the bathroom stall door to find:

  Clear fluids !! 

See you tomorrow for the next door.

Crohns Advent Calendar : Day 9

Opening the bathroom stall door to find:

  Baby wipes !!

See you tomorrow for the next door.

Crohns Advent Calendar : Day 8

Opening the bathroom stall door to find:

  Germoline !! (antiseptic cream)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 7

Opening the bathroom stall door to find:

 crosswords and word searches !! (for those hospital stays or infusion days)

See you tomorrow for the next door.

Crohns Advent Calendar : Day 6

Opening the bathroom stall door to find:

Remicade !!

See you tomorrow for the next door.

Crohns Advent Calendar : Day 5

Opening the bathroom stall door to find:

Prednisone !!

See you tomorrow for the next door.

Crohns Advent Calendar : Day 4

Opening the bathroom stall door to find:

epsom salts !!

See you tomorrow for the next door.

Inflammatory Bowel Disease in Canada

There are 270,000 people living with IBD (Inflammatory bowel disease) in Canada.

That's 1 in every 132

That's too many.

Crohns Advent Calendar : Day 3

Opening the bathroom stall door to find:

Vitamins B, C, D, E... and every other letter in the alphabet

See you tomorrow for the next door.

Crohns Advent Calendar : Day 2

Opening the bathroom stall door to find:

the book "10,000 Excuses NOT To Attend An Event Because of Your IBD: Volume 2"

See you tomorrow for the next door.

Crohns Advent Calendar : Day 1

And here we are once again, hard to believe it's been a year already.
It's the Crohn's advent calendar, let's see what there is this year, shall we....

Opening the bathroom stall door to find:

Toilet paper !!

See you tomorrow for the next door.

Remicade Divorce

Well, it's over.
8 good years have come to an end.
It's been a little rocky this past year, I'll have to admit, but the decision has been made.
We're done.

The final straw was my last visit to the hospital for surgery on another peri anal abscess, but my colonoscopy last October already showed the tell tale signs of my body becoming immune to the Remicade (Infliximab). My gastro told me that she saw "significant" ulceration even though my Remicade levels were pretty good.  I have noticed these past few months that I have not been 100%, tired all the time, no energy what's so ever.
So, what's next for me and my crohn's? Humira (Adalimumab).  I have never had to inject myself before, so it should be interesting.
All this comes at a time where I would have to come off Remicade anyway as the government is forcing everyone on Remicade to switch to a biosimilar, for no medical reason what so ever. It's all about money and not what the individual patient needs. No consultation with doctors or patients, just switching them.  The government set a deadline and the companies taking over the treatments are NOT prepared and are overwhelmed with the amount of patients.  This was not thought out very well.
In my case now, Humira, even though it is a biologic, does not fall under the governments "decree'.
I have to start all over again with tests, talking with Humira, Pharmacare, etc. I need to find out if I'm covered or if it's going to cost me. I've done everything else, now just waiting to hear about coverage, fingers crossed.
I do like the fact I don't need to go to a clinic anymore and I can have the Humira delivered to my house. I'm sure injecting myself will be something I need to get use to, but you have to do what you have to do to survive in this world.
My first injection should be end of December beginning of January.
Great way to bring in the new year.....

Peri Anal Adventure

Let me start by saying:

Peri anal disease (fissures, fistulas and abscesses) are a pain in the ass!! 😄

In my 31 years living with Crohn's, 29 of those years have been dealing with peri anal disease.
Twenty nine years of not being able to sit down like a "normal" person.
To say that I am sick and tired of this disease is an understatement, to say the least.

Let me tell you how the past couple of weeks have been for me.

I started to have problems on November 15 when I started having pain and an abscess form between my anus and scrotum. Not my "usual" place for abscessing, so right away I knew something was wrong. Normally, I get them lower and on either side and they would drain on their own, so when this one wasn't usual, I started to worry.
Now, I'm bit of a procrastinator, so I, of course, will wait until it drains on it's own (snicker).
Deep down I knew I should probably head to the ER and have it drained, but experience tells me, it's a Friday and Friday's and Saturday's are some of the worst times to go.... so I wait.
I stopped eating so to avoid going to the bathroom and just laid in bed, but even then, good luck trying to find a comfortable position. Of course as soon as I find that position, I have to get up, or move, or something. The pain from the pressure is getting to the point that anything touching the abscess, even the air itself, brings a tear. It would be nice NOT to be wearing underwear, but, well, I have to.
It's now Sunday the 17th and it's clear that the abscess is not going to get better nor will it drain without help. Having said that, I STILL procrastinated about heading out to the ER, but around 11 am my mother in law (who was already at the house for something else) agreed to take me. I got on my "hospital gear" which consists of track pants and T-shirt and removed my wedding ring. My track pants have a rear zipper pocket which is where I keep my phone and medical card, cuz that's all you need.
I had to lay down in the back seat for the 10 minute journey and popped my head up when we got there to see how busy it was in the waiting room. Luckily you can see it from the road. 1, 2, 3....8, not too too bad so I got out to check in. I had to bend down at the registration desk instead of the chair and explained why I was there. Got my wrist band and told to wait. I stood in the far corner "trying" to stay somewhat comfortable leaning against the wall waiting for my name to be called to triage.
Not too long of a wait, about 20 minutes before I was called. Got my blood pressure checked, temperature and pulse and explained again, in more detail, what was going on. The nurse looked genuinely concerned and asked if I normally had low blood pressure and high heart beat.... nope.
She directed me to a third window for registration and I waited about 5-10 minutes before they called me in to beds, thank god they had one for me because laying down was the only comfortable position. Got changed, laid down and waited.
Two hours later, a lab tech came by for blood work even before seeing a doctor, which took another hour. It's been 4 years since I have been to the ER and which doctor comes through the curtain, but the same one from 4 years ago. He had a look and you never want to hear the doctor say "hmmm, well THAT's interesting".  He was reacting to the location of the abscess as it looks as though this one had tracked up from the ones lower down closer to my actual butt instead on where it is now pushing up on my scrotum.  Right away he has to touch it, the abscess, not my scrotum, LOL...and I had to jump because it's sensitive to the touch.  He said that he want to get an ultrasound done and recommended I get IV pain meds first, cuz it's going to hurt. Had to totally agree, no argument here.
Now, I know I hadn't been in awhile but they didn't bring my normal Morphine/Gravol mix, nope, they brought Tramadol/Gravol mix. I told the nurse that I have never had Tramadol before and he said it's better and faster than Morphine and boy was he right! Felt it immediately. I'm not one for pain meds because I don't like how they make me feel but I knew I'm going to need it for what's going to come.
I got wheeled down in the bed to the imaging and had my ultra sound. Not too too bad actually, but the technician had to call the radiologist in, so there I am spread eagled on the bed while now 2 people scan my privates. All I really cared about is what the radiologist said and that was "it looks like just a pocket of fluid" , which is what I had hoped.  I did my best to clean up all the gel which is hard to do on a good day, let alone a bad day and in weird places you never thought you would ever get gel. Wheeled back down to the ER department now to wait for the doctor to look.
The doctor came back to tell me that he has referred me to a surgeon, but he's in the OR right now and will come down when done. He would have done it himself with conscious sedation right there, but still wasn't comfortable with the abscess's location just in case something went wrong. I understood and thanked him.
The surgeon finally came down to see me, I have now been in the ER for 9 hours, and he agreed the OR would be a better place to get this done. Signed the paperwork and within minutes I was up to the OR. Did the typical discussion with the OR nurse and the anesthetist and off into the room to hook me up with the good stuff and a nice sleep.
Woke up and the pain was gone....thanks goodness...but now have pain from the surgery. Now comes the question, what did he do? Did he just cut and drain? Did he cut away more? It's all taped up so I can't tell. Luckily, I was in a room right next to the bathroom which is always nice. Needed some pain meds, but only once.  Sleepless night, I never could sleep in hospitals plus I was up to the bathroom frequently as my intestines start to work again.
Surgeon came by later that day around noon and let me know it was about 40 minutes in surgery and he cut, drained and packed the area, but he didn't find anything "extra" to be concerned about. It appeared to just be a pocket of fluid which when tested, came back negative for bacteria, etc. I could take the packing out myself the next day and doesn't need re packing. Turns out, the packing came out on its own the following day anyway.
It's now over a week post surgery and everything is working fine and "back to normal". It's still a little uncomfortable to sit and my energy level is very low, I have to rest more than I like, but the pain is gone.
This just goes to show that crohn's will pop up in some form just to let you know that it's still there. For me, it's been 4 years since my last hospital visit and maybe my crohn's was giving me a little nudge to say, dont forget about me.
I never will, I never will.

You Might Be A Crohnie

If you would rather stand that sit down in one of those hard, pain inducing, tear jerking, torture chambers for your ass at your doctor's office....
you might be a Crohnie

You Might Be A Crohnie

If you know the difference between fistulating and nonfistulating perianal disease...
you might be a Crohnie


This is me today and the past few days...not been a pleasant or comfortable this week 😭

IBD Survey

The Gastrointestinal Society, badgut.org , is conducting a survey called,

IBD Patients: What's Missing In Your Care?

They are looking for IBD patients of all forms and their experiences and opinions to help shape future programming for patients

Please click here https://badgut.org/ibd-survey-2019/ and help

Thanks!!

You Might Be A Crohnie...

If you can suffer from Crohn's disease, peri anal disease, kidney stones, psoriasis, fatigue, dehydration, malnutrition, and depression and STILL get up everyday looking as fresh as a daisy
...you might be a Crohnie

Crohn's Disease in the Workplace

I am happy to have helped with this article from Antidote along with Matt Strutt from Give Crohn's a Slap From Me and Natalie Hayden from Light's, Camera, Crohn's

https://www.antidote.me/crohns-disease-in-the-workplace

Thanks to Nancy Ryerson from Antidote for the article and the ease of communication.

.

My Date With The Flexible Camera

I had my annual colonoscopy last week and looking back, it's almost like having a first date.
It's not like a normal colonoscopy because, well, I don't have much colon left...about 6 inches, so it's more of a flexible sigmoidoscopy with sedation.

My "date" was on a Wednesday, so I started to prep on the Monday prior by starting to fast. I had breakfast that morning but then nothing except water or broth for the rest of the time. Drastic? Maybe, but I wanted to look good.... my colon that is. I found after all these years, not eating is easier than taking the disgusting colon prep.  The day before, I take two Dulcolax, just in case there's anything left cuz by now, it's just water coming out.

My test isn't until the afternoon, so I have what I'm going to wear laid out. I'm going for minimalism today, t-shirt and track pants, mainly so I don't have a lot to take off when I get there. No accessories except for my drivers license (because it has my medical number on it) and one ski glove. Ski glove, you might ask? Yes. I normally have the IV put into my left hand, so I heat my hand before heading out, then slide the glove on.  Keeps my veins nice and big.
After getting dressed, I now just wait for my ride. I can't drive because of the sedation, conscience sedation. Not sure why they call it that, cuz I never remember anything until the next day.

I get to the outpatient clinic, check in and usually only wait less than 5 minutes. It's like I've arrived at the restaurant and waiting for my table. The nurse calls my name and I head to my chair where she goes over my name, birth date and why I'm there. She tells me to take everything off except my socks and shoes....moving a little fast for my liking LOL...and slip into the little blue number she's laid out for me.  She said she'd be back with my IV, like I've just made a drink order, and covered my hands in a warm blanket. There's 3 other people sitting waiting, all of us dressed the same, but I always find it amusing. Sitting in the big comfy recliners, little blue "dress", socks and shoes and holding your belongings in a cloth bag. For me though, I'm all that PLUS my big black ski glove on the left hand...sexy! The nurse comes back with my IV "order" and asks me my name, birth date again and then sits down to do my IV....in my right hand! She explained they needed my right hand because I would be laying on my left side. Oh well, at least my left hand veins were poppin' ! No worries, at least she did a good job and the IV slid right in no problem, now it was just sitting and waiting for my name to be called. I never bring my phone or anything just in case someone makes off with it.  I never expect to get in on time. After all these years, I don't think I've ever had a test that was on time, so why fret over it. It was about 30-35 minutes later another nurse came and called my name and verified my name and birth date...again. We walked down to the room where my Dr. was sitting reviewing her notes on the computer about me. There were three other nurses in the room prepping everything while I undid my little blue gown and laid on the table, had electrodes stuck to my body, finger pulse attached, all the while "chit-chatting" with my Dr.  I've had my gastroenterologist for 30 years so the conversations are always light hearted, but this time she was discussing how I will need to switch from a biologic (Remicade, Infliximab) to a biosimilar (Inflectra, Renflexis) because the Government "said so". It's a touchy subject for me and one of the nurses knew it because my heart rate went up talking about it.  After all the chit chat, the Dr was ready for my meds. I always ask for lots, because I dont want to remember anything. She started injecting the first one...there are 3... and tells me to relax and not to fight it. Sounds like she was slipping me something in my drink, but she knows me too well, because I always try to keep my eyes open as much as I can, even to the point of opening them reeeeeeally wide to stop them from closing LOL.

The next thing I remember.... I'm at home. I don't remember anything. My wife picked me up and she said I was already dressed and sitting in the wheelchair waiting for her. I don't remember getting dressed. Apparently the nurse discussed paperwork after the "date" but I have no idea what about. She took a nice video of me after she got me into the car where, I think, I was pretending to be stripper putting my glove on and off while humming. I don't remember the drive home, getting into my house, talking with my kids, going to bed......nothing. Apparently, though, it was quite humorous. Like I had too many drinks.  Have look and listen.....

Last year my wife told me that I was pretending to be driving a race car while she was wheeling me out of the clinic, this year I was a stripper.

Still not sure what the camera saw inside, hopefully its all good, but we'll do it all again next year.

Wonder what I'll be next time....

Crohn's Tips

Here's another article I contributed to for WebMD about everyday tips when living with Crohn's Disease.

https://www.webmd.com/ibd-crohns-disease/crohns-disease/treat-18/live/crohns-everyday-tips

Thanks to Rachel Ellis for writing the piece.

Biologics Articles

Here are two articles about Biologics which myself and others are featured at HealthCentral
Thanks to Erin Boyle for writing the articles.

https://www.healthcentral.com/article/signs-its-time-to-switch-your-biologic

https://www.healthcentral.com/article/infusions-with-biologics-tips-to-make-crohns-treatments-easier

"Crohn's Disease Ate My Colon" - My story (Part Four)

Physically and Emotionally

Everyone talks about Crohn's Disease and how it affects your "gut health", I mean, there's a hell of a lot of things going on in there all at once. But the disease is much, much more than that, physically and emotionally as well.

When I was finally diagnosed, I already had symptoms for months. Pain, weight loss and diarrhea were the most obvious to everyone around me. I mean, I couldn't really hide it. It's hard to disguise running to the toilet every few minutes or being curled up in the fetal position on the floor or your clothes hanging off you like I was 10 and wearing my dads clothes. I learned fast that not eating helped take some of the pain away, but not always, and not eating forced the dramatic weight loss. Physically I looked like I was from a concentration camp, skin and bones. Ribs were showing, my gut was concave and arms and legs had no muscle.
The worst came when I was 'confronted' on the street by a perfect stranger. Remember how everyone says, 'don't judge a book by it's cover'... well this guy had never heard it before. He asked me...and I quote, (because I will never ever forget it) ' Do you have AIDS? '
I remember being stunned by the question because I had never thought about it before, but there it was. I responded by saying no of course and that I have Crohn's, he had no idea what that was and I wasn't about to explain it to him.

I was in my 20's and now weigh a mere 110 lbs (50 kg, 8 stone)

I knew I was skinny, I could see it like everyone else but that day burned into my brain. It's this day I attribute to where I became more of an introvert (turning in on oneself). Not so much "shy" but I purposely started to stay home, avoided going out on purpose, didn't want to see anyone. I never was a party person but had lots of friends, a couple of close ones and a girlfriend. It's amazing what having an illness will do to your social life when no one understands, or wants to understand. It takes a toll on your life physically and mentally. I was with my girlfriend at the time for 3 years and she was there in the beginning when I started to get sick, but after my first two back to back surgeries, she dumped me when I got home from hospital. She said SHE couldn't handle me being sick, only reaffirming what I was thinking, who's going to want me in this condition? I mean, who could blame her, I went from having a toned athletic body (from figure skating and soccer) to skin and bone in about a year. I was still "me" but... not.
Everything starts running through your mind, including "why me?"  What the F did I do in my short life at the time, to warrant such a disease and my now new life? Still does sometimes. Depression goes hand in hand with this disease, and any disease for that matter. No one understood what I was dealing with and now I didn't want to talk about it... with anyone. Even if I wanted to, who was I to turn to? No one I knew had ever heard of Crohn's disease. There was no social media at the time, so I needed to go to the library (it's a place where they have books, LOL) and start researching. But even then, there was not much. No other people, no information, no job, no money, nothing. Talk about isolated.

In the meantime, not only am I dealing with regular symptoms from Crohn's but also the other complications like, kidney stones, fistula's, fissure's, peri anal disease, fatigue, dehydration, etc, PLUS malnutrition. I now know, but I didn't at the time, I was becoming depressed from all that was happening and how everything was collapsing around me. And then, in 1991, I had had enough. I tried to commit suicide.

I was home alone, things were not going well for me personally as well as with my Crohn's, I made myself a rum and coke, grabbed my bottle of Tylenol 3's and laid down on the couch. I remember taking 3 at a time, I don't remember how many I took in the end, but when I started to feel "funny" in the head and light headed, I started to freak out and got scared. I remember calling a Help Line to talk with someone (when I probably should have called 911) and I didn't want to call family or friends, not that I had many friends left. Let me tell you, the "help" line was not much help the woman on the other end of the phone eventually told me that she "had to go now, it was the end of her shift". I remember thinking, "are you fucking kidding me?", but in the end, it turned out to be okay because right after getting off the phone, I started to feel sick and ended up throwing up.

Today, I'm glad it didn't work. Today, I have a good life, married, two kids, a home, a job, etc.
I still have days where, mentally, I need a rest. Physically, I've gained all the weight back (thanks to Remicade), I probably could lose a few pounds now LOL! I still have days I feel pain, discomfort and other complications but I deal with it and move on. I don't have time to worry or dwell about it but I rest when my body says so and when my brain says so.

We all have those days, we all know how you feel and we are all here for anyone who needs help, even just to lend an ear, but we would never say, "sorry, it's the end of my shift, I have to go".

Coming up....Part 5

Crohnie Quote of the Day

"When a person with IBD says they are having a "shitty" day, they could mean it figuratively AND literally at the same time"

Around the World....33 times

Following up on my last post with the amount of time I have lived with Crohn's disease, here's something interesting...

The earth is 24,902 miles. If you walk an average of 3 mph, it would take you 8300 hours if you didn't stop and you kept up that pace. That's 345 days.  (Quora.com)

So, going back to my previous numbers and factor in those facts, if I started walking around the world the first day I was diagnosed, I would have gone around 33 times by now! 

Another fun fact brought to you by.... well.... for know other reason than to go "hmmmm"

Yesterday....All My Troubles Seem So Far Away

Seems like yesterday anyway, but since my diagnosis, I have been a "professional sick person" and living with Crohn's disease for:

31 years, 2 months and 23 days

that's...

374 months and 23 days...

1629 weeks and 3 days...

11,406 days...

273,744 hours...

16,424,640 minutes...

985,478,400...401...402...403... seconds

So... to sum up.... a really, REALLY long time!!

If you can't already tell, it's a little slow at work today. 😆

.

What CAN You Eat?

We all get this question.
You know, when you go to someones house for dinner, they ask you what you can eat, or can't. Frankly it's not that easy to answer.
My answer always is, "Everything" and that gets me strange looks because they know that's not true.
It's just easier than trying to explain the foods that:

1. cause me problems
2. sometimes cause me problems
3. don't cause any problems
4. I outright avoid.

Easy right? Sometimes I will just eat whatever is put in front of me and pay for it later...though, I don't do that very often. I'll even tell them not to make something special for me, I will eat what you make, but will leave on my plate what I would normally avoid.  I hate making people feel THEY need to make changes for me. It's not fair to them.

So, I'm going to try and make a list of items of things I can and cannot eat. This is tailored for me and will be different for you. This also changes on "bad" days such as a flare.

DRINKS

I try and stick to just water because it's the easiest, BUT, I drink Brita filtered water. I cannot drink water straight from the tap, it's causes problems for me, I've been using Brita for almost 30 years now.
I avoid soda, but do drink it occasionally, because of the sugar and causes bloating. If I drink it at a restaurant, I ask for no ice (ice is usually made from tap water) and I know I'm heading home afterwards as I try to avoid public washrooms.
Fruit juices are also out.
I drink coffee and tea occasionally, but with coffee, only brewed coffee and not instant. With 1 teaspoon sugar and no milk or cream.
Milk is a straight "nope". Way too many problems drinking milk, even lactose free milk.
Alcohol is also a no go. I will have a small glass of white wine at Christmas and that's it. I do miss drinking long island iced tea though...

VEGETABLES

I ALWAYS avoid "gaseous" vegetables like, onions, cauliflower, cabbage, broccoli, asparagus, etc.
I also ALWAYS avoid all raw vegetables. They can cause blockages in the intestine because of strictures. I once was hospitalized from eating raw carrots...never doing that again, it was a very bad experience, throwing up every 5-10 minutes.
I avoid leafy green vegetables such as lettuce, spinach, kale, etc. You know....the ones you're suppose to eat. LOL
Any vegetable needs to be cooked down so it's soft.
My normal vegetables are cooked carrots, corn, potatoes or squash. I will have cucumber, with the rind cut off.

MEAT

This one is fairly easy.... chicken, fish, pork or hamburger.
The only problems I've ever had with meat is with steak. It's too hard to break down, in me anyway.

DAIRY

I try very hard to avoid milk or some milk products like ice cream, cream cheese, cream, cottage cheese, sour cream, whipped cream, etc.
Though, I CAN have yogurt, some cheeses (mainly hard cheddar's) and frozen yogurt.
When I was a baby, I could not drink cow's milk and was brought up on goat's milk. I outgrew it and did drink cow's milk (loved chocolate milk) as I was in soccer and figure skating, but when I was diagnosed with Crohn's, it caused wayyyy to many problems, even Lactose free milk. So I avoid it all together.

GRAINS

I try and avoid grains, not easy but I stick to white or sourdough bread. But I can tolerate instant oatmeal. The good healthy grains like whole wheat etc, has too much fiber.
I do my best to avoid fiber as it causes me to go to the bathroom because of lack of large intestine.

FRUIT

Basically.... banana's. Everything else has fiber. Berry's have seeds and other fruit have a skin that contains the fiber. So the safe bet are banana's

NUTS AND SEEDS

And that's a firm NO! BUT my "go to" protein is smooth peanut butter and I eat A LOT of it!

It's hard to list everything, but I highly recommend to keep a food/drink journal. It was very helpful when I was first diagnosed.
I kept track of the time I ate or drank, what I ate or drank, when I went to the bathroom and type of bowel movement (watery, semi formed, etc.), as well as if there was gas or blood.

A food journal is a must, especially for the newly diagnosed.

Crohnie Quote of the Day

The following quote has to do with all chronic illness sufferers, no matter what the disease.
We are all told that we "are strong", or that we are "the strongest people they know" which is great, but we all don't feel that way sometimes. Then I heard this quote...

"People want to have something positive to say. They want to tell you how strong you are and how you need to fight. But, they don't know how hard it is and how you basically never feel strong.
But you deal with all this awful stuff and you feel helpless, sad, but you keep trying"

I don't know who said it or wrote it, but it's true.

You Might Be A Crohnie....

If you get excited when you have a "semi formed" bowel movement
.... you might be a Crohnie

Are Clinical Trials Necessary?

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patients life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

‘any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself.
Imagine diseases or conditions like, heart disease, cancer, alzheimers, parkinsons or crohns/colitis WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.

Let's take me for example. I am currently on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patients weight.
So I'm at about 10 mg/kg because I have an ongoing problem with fistulating peri anal disease.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, eventhough my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I've now been on Remicade for over 7 years now and it's been a "god send", for me. I regret my decision 19 years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be with improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's crohn's and colitis foundations. Many will have links on their websites to pre screening. You might get declined, but it just means you dont meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research

You Might Be A Crohnie

If your gut talks to you so loud, it's like having another person in the room with you
.... you might be a Crohnie

You Might Be A Crohnie

If you can be through pain, fatigue, dehydration, bloating and overall "unwellness" and still look like nothing is going on
.... you might be a Crohnie

WEGO Health Awards

I'm honored and humbled to have been nominated for this years WEGO Health Awards and endorsements are now open.
If you have liked, enjoyed, laughed or have been informed from reading my blog, please feel free to endorse me here:

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

I have been nominated for Best in Show: Blog and Hilarious Patient Leader.

But if not me, then maybe endorse one of the other health activists/leaders listed

Thank you and good luck to all !!

You Might Be A Crohnie

If after you check in to your hotel room, you notice there are ONLY two rolls of toilet paper
... you might be a Crohnie

You Might Be A Crohnie

If you have come up a form of "toilet yoga" just to find a comfortable position while going

....you might be a Crohnie

You Might Be A Crohnie

If a 36 roll bag of toilet paper will last you a week
.... you might be a Crohnie

Crohnie Quote of the Day

I don't look sick...

                              You don't look stupid...

... looks can be deceiving

Remicade : Day 2507

Infusion #61 turned out to be a little more eventful than normal.

I was switched from 400 mg, which I have been on since 2012, to 600 mg for my last 3 infusions.
Now, for this infusion, my doctor raised my dosage to 800 mg and we're going to see how that goes to help my peri anal disease (fistulating). New research has shown doses of 1000 mg of Remicade has helped with fistulas so we're slowly raising my dose to get to that point.
So what made this infusion different than all the others? Well, let's start with my arrival to the clinic. I pulled into the parking lot with 5 RCMP vehicles spread throughout. One at each entrance and 3 in front of my clinic lights flashing. Of course my first thought was, "ah crap, the clinic better not be closed". It was an interesting site. No one in the cars, but lights flashing and cars running. Luckily the clinic was open but no one knew what was going on. There's a bank in the complex, so maybe it was robbed...who knows. That was event number 1.
Event number 2 was happy and sad at the same time.
When I get to the clinic, I have my blood pressure and temp taken followed by checking my weight.

Blood pressure - good
Temperature - good
Weight - ummmmmm....... I think the scale's broken.

The read out said 83.9 kg (185 lbs, 13 stone) I first thought, that can't be right. The nurse said to try it again. Yep, same the second time. She asked why I thought it was wrong and I asked her to check my last infusion weight. She goes "Oh, what have you been eating?"
I was 77.9 kg (171 lbs, 12 stone) just 6 weeks ago, but I haven't changed my diet...other than eating jujubes...since then. I know I didn't eat 14 lbs of jujubes!!

So... "happy" I'm gaining weight and "sad" I'm gaining weight.

During my infusion I thought over and over what I did different....nothing. So the only thing I can think is, the change in my dosage from 400 to 600 mg helped immensely in how my bowels are absorbing nutrients now. Now, I'm at 800 mg and if this keeps up, I'm going to have to go on a diet for the first time in my 51 years.


(.... and give up jujubes)

Remicade (Infliximab) Levels

Have you ever known what your Remicade "levels" were? Precisely they're called the

Infliximab trough concentration levels

Now, to be honest, I never knew what these were, only that I have heard my specialist talk about my Remicade levels and how they are fine. I get blood work every now and then to check them to make sure I even have some.
But not until today, when I went to my semi yearly visit to my specialist did I understand what they were. She was telling me that she wanted to raise my dose to 800 up from 600 every six weeks to try and combat my lingering peri anal disease. She went on to tell me that my Remicade levels had dropped to 2 ug/mL (microgram/milliliter) from 3.
Which basically is the lowest level the Remicade has reached before I get my next dose.
Ideally the target level should be between 3 and 7 ug/mL, that's the target at least.
What scared me a little was the fact that she wants my levels to reach 10. But if the highest range is 7...what the hell is 10?! She went on to tell me that new research has shown that peri anal disease does well with levels to 10 ug/mL.
In my case, the Dr thinks my levels were maintaining above 3 because I was taking Imuran (azathioprine). But for the past few months, I've been weening off of it so, she is raising my dose of Remicade instead.

First dose at 800 is next week.

Well... let's see what happens, shall we.

Fingers crossed.

You Might Be A Crohnie

If you know you're gaining weight, simply because your thighs are now touching
.... you might be a Crohnie

Crohnie Facts Of The Day

Crohn's Disease is SOOOO much more than just a "pooping" disease.
It can also lead to problems with:

Abscess's
Fissures
Fistula's
Malnutrition
Strictures
Arthritis
Bone loss
Vitamin deficiencies
Skin
Eye's
Kidney's
Liver
Development

Not to mention the mental health problems associated with some, if not all, of these.

You Might Be A Crohnie

If you have discovered that there are multiple ways to sit on a toilet
...you might be a Crohnie

"Crohn's Disease Ate My Colon" - My story (Part Three)

What the hell is Crohn's Disease?

You can't imagine what it's like to be diagnosed with a chronic illness, no cause, no cure and to be an illness that involves your bowels. So embarrassing. I had to look up what the fuck Crohn's Disease was, which meant having to physically go to the library and even then, there wasn't much on the shelves.

The Internet wasn't invented, smartphones wouldn't be here for years, so I couldn't just sit down and search the world wide web to find out about Crohn's. No social media or online support groups like there is now. Everyone around me had no idea what Crohn's was nor had they ever heard of it.
So, or course, I immediately went to "what the hell did I do, to get it in the first place"? I remember racking my brain over and over on what I might have done in my life that would cause me to get sick. I looked through as many books as I could find, was it something I ate?, something I did as a kid maybe? You see, I rarely got sick growing up, so the prospect of now living with a disease that I couldn't get rid of or know how I got it in the first place, just devastated me.

What I was able to discover was that Crohn's Disease is an inflammatory bowel disease that can affect anywhere in the digestive tract from the mouth to the anus. Basically, the immune system attacks the digestive tract thinking it's a foreign body, usually at the end of the small intestine where the small and large intestines meet (as in my case). Why? Good question.
It's a chronic condition, which essentially means I will have it the rest of my life. There will be times of remission and times of flare ups, but it will be on going and last forever. Or until a cure is found.
Where symptoms are concerned, mine were sudden, one day I was fine, next day I had pain coming from my abdomen, followed by frequent diarrhea, fatigue, loss of appetite and weight loss.
Causes..??  No one knows for sure, but genetics are a factor as well as the environment, bacteria or stress. The main problem, I think, is that no one knows what the trigger is. There has to be something that happens in the body that tricks the brain into thinking your intestines are a foreign body and starts attacking it. Not everyone gets it, so what is the trigger?

And of course, everyone's experience with Crohn's or Colitis is different. So everyone's treatment and meds will be different. Mine began with 1000 mg of Salazopyrin (Sulphasalazine) and 40 mg of Prednisone. Remicade (Infliximab) in my case, won't be around for another 10-15 years.

And so began my journey into the world of doctors, specialists, nurses, anesthetist's, surgeon's, clinic's, hospital's, and much much more.

I was still only 20 years old....

Next..Part Four