My 34-Year Crohn's Journey Continues

I have had another article published on inflammatoryboweldisease.net about how my IBD journey continues.

Come read it here:

My 34-Year Crohn's Journey Continues

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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Gutsy Walk June 5, 2022

Once again I will be participating in Crohn's and Colitis Canada's Gutsy Walk on June 5th, 2022 with the Fraser Valley West Chapter.

This year, I have been named the Fraser Valley West's Honorary Chair!  It truly is a great honor to represent the Fraser Valley West Chapter this year and hope to not only money for Crohn's and Colitis Canada research, but also more awareness of inflammatory bowel disease.  Hopefully also bring more awareness to the stigma of bowel disease and now as an ostomate.

If you would like to donate to my walk, please donate here:

My donation page

The cure for IBD is around the corner. We're so close.

Thank you for your donations.

~Vern

Over 3 Decades of Crohn's Pain

I have had another article published on inflammatoryboweldisease.net about IBD and secondary pain.

Come read it here:

Over 3 Decades of Chronic Crohn's Pain...and Finally Pain-Free

Visit inflammatoryboweldisease.net for more articles regarding IBD.

How My Crohn's Journey Began

I have had an article published on inflammatoryboweldisease.net about how my IBD journey began.

Come read it here:

How My Crohn's Journey Began

Visit inflammatoryboweldisease.net for more articles regarding IBD.

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'Twas the Night Before a Crohnie Christmas

Every year for the past 16 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

‘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 west 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's disease-free...at least for one day.

All the best for a happy and healthy 2022 !!!

-Vern

From the Editor

 Hi all!

I wanted to give everyone an update because I haven't been posting as much as I normally do.

I have been going through some changes in 2021, some good, some bad.

My time has been busy with work but also school.  Yes, I went back to school (last February).  I have been studying to be a medical transcriptionist.  I am into my 4-week practicum right now so almost done.  Since 1988 I have read all my medical notes, surgeries, clinical notes, nurses' notes, etc, and felt that I can do that too.  It's been fun these past 10 months learning about different medical conditions, both physical and mental, but also very busy and challenging.  

I needed time off work last September/October for health reasons but when I was ready to return, they fired me.  They said my position as the office manager was made redundant but...well...no comment.  One thing I can say is the absence of stress from that job has been amazing!! I was with them for 18 years and my "boss" was very cold when they called me in to say sorry, but you're done here.  Good riddance.

I have also started writing articles for a health website but I will update that later as nothing has been published yet.

So, things are turning around. I'm still dealing with my ostomy (leaks, skin, etc) but it is what it is and I will need to learn to live with my new normal of Crohn's.  The biggest change is the absence of pain. It's a weird feeling and I realize it's strange to say so, but I have had pain for 32 years straight and just 1 year of no pain.  It's great, just different, especially not having to keep T3's "in stock" at home.  I haven't taken any painkillers since December of 2020.  The perianal abscesses and fistulas are gone for now and I can actually sit on hard surfaces again (but I still prefer a cushion 😁). My kidneys are correcting themselves finally and my B12, D, and iron are the best they have ever been in my entire life.  I can't thank my surgeon enough for giving my life new meaning and I told her so a few weeks ago.  She told me it made her day to hear it.

So, all in all, things are turning around finally and I hope to post more now that school is coming to an end soon.

Thanks for the messages and for everyone reading my blog!

-Vern

  

You Might Be a Crohnie If...

 If you begin to panic when your supply of toilet paper drops below 10 rolls

...you might be a Crohnie.

One year ago.....

 As we watch Hocus Pocus (as we do each year) and the kids carving pumpkins in the kitchen, I think back to just 1 year ago where on Halloween day my doctor called to tell me to get to the ER as soon as possible... I was in acute renal failure.

To take you all back, I had temporary loop ileostomy surgery in September and was recovering at home while waiting for permanent ileostomy and proctectomy surgery (aka Barbie/Ken butt).  I needed to wait as I had multiple fistulas with my perianal disease and the temporary ostomy diverted stool away from the rectum in hopes to calm it down.  During my recovery at home, and unknown to me, I was losing too much liquid through my ostomy.  Was it watery? Yes.  Did I know any better? No.  I called my surgeon several times and was told it was part of the recovery.  But when I started to have dizzy spells, nausea, vomiting and passed out, I called my doctor requesting blood work.  The next day he called, it came back showing a GFR of 4 (low) and creatinine of 1049 (high) and to get to the hospital asap and he will call ahead for them to expect me.  I was in acute renal failure because of my ostomy.  I went by ambulance in case I passed out along the way, but I didn't.

I was put on drugs and saline as soon as I entered the ER and was waiting for a call from my surgeon at a different hospital.  I was in this ER for Halloween waiting and the next day I was transferred via ambulance to another hospital to treat my kidneys and await my other surgeries.

Fast forward 1 year.  The ostomy and proctectomy surgeries went well (6 hours).  I spent 27 days in hospital including my first time in the HICU (High Intensity Care Unit) because of my kidneys and blood transfusions.  It has taken 11 months for my GFR and creatinine to come back to "normal".  Still low, but way out of danger and looks like no kidney damage.  I now have a new doctor to add to my list, a nephrologist.  Side note... all my doctors (family, surgeon, specialist, nephrologist, and urologist) are all women and I thank them all.

It was 1 year ago when I got scared again for my health.  The thought of renal failure on top of everything else I've been through with Crohn's scared the hell out of me.  I was so close to either needing dialysis or a kidney transplant.  I am glad I requested blood work.

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You May Be An Ostomate If...

 If you subconsciously check your bag while driving through the country because of the pungent air

...you might be an ostomate

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You May Be An Ostomate If...

If you are having a get-together with family and friends and all you can think to yourself is, 

"I'm totally pooping right now"

....you may be an ostomate.

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